Comprehensive Quality Of Life Assessment Research Articles

Selecting a Contextualized Set of Urban Quality of Life Indicators: Results of a Delphi Consensus Procedure

Although indicators are commonly used to measure/assess urban quality of life (QOL), there is no consensus in the literature on the core indicators of urban QOL. This paper aims to identify a set of key indicators that will be used to assess/measure urban QOL in the Saudi Arabia (SA) context. For this purpose, a three-round online Delphi procedure is used. A group of 92 local experts were asked to rate the importance of a set of pre-defined indicators in assessing/measuring urban QOL. The results reveal that the panel of experts reached consensus and agreed on the high importance of 53 indicators for assessing/measuring urban QOL. These indicators provide appropriate coverage of the three core dimensions of urban QOL: environmental, social and economic. However, the results also show that the social indicators are perceived as more essential than economic and environmental indicators. This finding has practical implications for designing and developing QOL assessment tools to better capture and measure urban QOL in the SA context. Furthermore, research findings also identified some methodological limitations associated with using the Delphi approach, which need to be addressed to ensure the development of comprehensive QOL assessment tools.

Relationship between quality of life and behavioural disorders in children with persistent asthma: a Multiple Indicators Multiple Causes (MIMIC) model

Knowledge on multiple interdependences between quality of life (QoL) and behavioural problems in relation to asthma severity and control is undetermined. The aims of the study were: (i) to assess the relationship of QoL and behavioural problems with asthma severity and control (ii) to predict children’s “abnormal/borderline” status with variation in QoL. For these purposes a multicenter case-control study on 47 Severe Asthma (SA) and 94 Moderate Asthma (MA) children was performed. The MIMIC approach was applied to investigate the effect of SA and non-controlled asthma (NC) on QoL and behavioural disorders. Logistic regression was used to estimate probabilities of having an “abnormal/borderline” status with variation in QoL. The MIMIC model showed that the magnitude of the effect of SA and NC was larger on QoL (β = −0.37 and β = −0.30, respectively) than on behavioural problems (β = 0.27). With regards to the probability of having a borderline status, in MA a QoL of 1 returned a probability of 0.81, whereas in SA a QoL of 1 returned a probability of 0.89. In conclusion, SA children are highly affected by impaired QoL and behavioural problems. The MIMIC model allowed us to obtain a comprehensive assessment of QoL and behavioural problems with asthma severity and control.

Clinical severity measures and quality-of-life burden in patients with mycosis fungoides and Sézary syndrome: comparison of generic and dermatology-specific instruments.

Given the severe symptom burden and chronic nature of mycosis fungoides (MF) and Sézary syndrome (SS), effective assessment of quality of life (QoL) is essential to guiding patient-centred care in this population. In this study, we aim to provide a comprehensive assessment of QoL in early- and advanced-stage MF/SS and to assess the correlation of traditional measures of clinical severity with QoL measures. Between July 2017 and April 2019, outpatients at an academic medical centre with either MF/SS (n=115) or general dermatology concerns (n=115) completed generic and dermatology-specific QoL instruments [Health Utilities Index Mark 3 (HUI3), RAND 36-Item Short-Form Health Survey (SF-36), Skindex-29, visual analogue scale for itch (VAS itch) and 5-D pruritus scale]. The mean scores of MF/SS patients were compared to that of controls using multivariable regression models adjusted for demographics and medical comorbidities. Cluster analysis of the QoL instruments and clinical severity measures (e.g. stage and body-surface-area involvement) was performed. Patients with MF/SS scored significantly worse than controls on all QoL instruments used, with advanced-stage (IIB-IVB) disease having the worst QoL impairment. Early-stage (IA-IIA) and advanced-stage MF/SS patients had significantly reduced overall health status (HUI3; P<0.05), with largest decrements in social functioning and usual role functioning due to physical and emotional health (SF-36; all P<0.05). MF/SS had significantly worse skin-specific impairment than controls, with advanced-stage disease reporting the most severe skin-specific burden (Skindex-29, P<0.05). Clinical severity measures had a weak correlation with generic (|rs |=0.02-0.27) and moderate correlation with dermatology-specific instruments (|rs |=0.41-0.53). MF/SS have a significant impact on multiple domains of patients' QoL, including social, emotional and physical functioning. Current clinical measures do not adequately address QoL outcomes, underscoring the need for integrating formal disease-specific QoL assessment into the routine evaluation of MF/SS patients.

Validation of the LITHUANIAN version of the 19-item audit of diabetes dependent quality of life (ADDQOL \u2013 LT) questionnaire in patients with diabetes

BackgroundCurrently there is no diabetes-specific quality of life (QOL) instrument available in Lithuanian language. We aimed to develop a Lithuanian version of a widely-used individualised instrument - the Audit of Diabetes Dependent Quality of Life questionnaire (ADDQOL-19) and assess the validity and reliability in patients with type 1 and type 2 diabetes mellitus (DM).MethodsThis study was conducted at the Primary Care and Endocrinology Outpatient Clinics in Vilnius. The ADDQOL was translated from the original English (UK) into Lithuanian using a standardized methodology of forward and back translation. After cognitive “debriefing” the validity and reliability of LT-ADDQOL questionnaire were assessed in a sample of 138 diabetes patients. Cronbach’s alpha coefficient, factor analysis, independent t tests and ANOVA were used.ResultsThere were 106 participants with type 2 and 32 with type 1 DM included in the study with a mean age of 55.5 years (± 14.5) and 56.2% women. The Cronbach’s alpha coefficient was 0.908 and most of items loading values onto one single factor were larger than 0.40 (varied from 0.41 to 0.77), indicating good internal consistency and reliability of instrument.ConclusionsWe developed the Lithuanian version of ADDQOL-19 which is a valid and reliable instrument to measure impact of diabetes on QOL. It could be further used by clinicians and researchers for comprehensive assessment of QOL in adults with diabetes.

The personal outcome measures®

BackgroundThe Personal Outcome Measures® is a person-centered tool to measure the quality of life (QOL) of people with disabilities, especially those who receive long term services and supports. While the outcomes examine people's satisfaction with their lives in a wide range of areas, the organizational supports determine if service agencies are appropriately supporting people with disabilities to ensure people with disabilities have the best possible QOL. The Personal Outcome Measures® has been administered to tens of thousands of people with disabilities and older adults over its twenty-five years of existence. ObjectiveIn order for the Personal Outcome Measures® to adequately measure the QOL of people with disabilities, it must continuously be refined in alignment with the advances made by people with disabilities, and the disability service system. Therefore, the purpose of this study was to re-validate the Personal Outcome Measures®. MethodsA Principal Components Analysis was used to analyze data from 1473 people with disabilities to determine if any indicators needed to be removed as well as the underlying structure of the Personal Outcome Measures®. ResultsThe analysis revealed the Personal Outcome Measures® has construct validity. It also found that the 21 indicators fall into five underlying factors: my human security; my community; my relationships; my choices; and, my goals. ConclusionsTaken together these twenty-one indicators and five factors represent a multifaceted and comprehensive QOL assessment that aims to improve the lives of people with disabilities.

Pilot study of an interdisciplinary supportive care planning intervention in pancreatic cancer.

A diagnosis of pancreatic cancer is often associated with higher symptom burden, lower functional status, and worse quality of life (QOL). To date, few interventions have focused on the unique QOL needs of patients with pancreatic cancer. The purpose of this pilot study is to determine the feasibility of an interdisciplinary supportive care planning intervention in patients with pancreatic cancer during disease-focused treatments. Patients enrolled in this prospective, pre- and post-intervention pilot study received a supportive care intervention that included the following three components: comprehensive QOL assessment, case presentation at interdisciplinary care meetings, and two nurse-administered educational sessions on QOL concerns. Patients completed outcome measures that included the FACT-Hep, FACIT-Sp-12, and self-report of finances and out-of-pocket costs since diagnosis. Measures were completed at baseline prior to receiving the intervention, and follow-up occurred at 1 and 2months post-intervention. A total of 10 patients were enrolled during a 4-month period who provided informed consent, received the intervention, and completed the study (58% accrual). Examination of pre- and post-intervention QOL outcomes revealed changes across the three evaluation time points that were not statistically significant. Patients were highly satisfied with the intervention, with 80% reporting that the intervention was "excellent." Discussions during the interdisciplinary care meetings and educational sessions were largely focused on physical and psychosocial needs. An interdisciplinary supportive care planning intervention was potentially feasible and acceptable for pancreatic cancer patients in an ambulatory care setting.

Modern approaches to assessing the quality of life in children with arrhythmias

The paper presents the special questionnaire «Quality of Life in Children with Arrhythmias» that reflects the subjective assessment of quality of life (QOL) in patients with cardiac arrhythmias and a procedure for the comprehensive assessment of QOL in children with arrhythmias on the basis of subjective and objective data. It gives the results of using the above procedures for assessing QOL in 151 children (71 girls and 80 boys) aged 6–18 years with various cardiac arrhythmias. Complaints were absent in 21,9±3,4% of the children with arrhythmia and were nonspecific, being rarely observed, in 29,8±3,7%, suggesting that there was no reduction in QOL according to their subjective assessments. Comprehensive assessment of QOL showed that its indicators were significantly lower (p&lt;0,05) than those obtained by subjective assessments. Thus, cardiac arrhythmias accompanied by a varying decrease in QOL were seen in 84,8±2,9% of the children, as shown by its comprehensive assessment and in 48,3±4,1% of the patients, as evidenced by their subjective assessments. Patients with organic heart disease and/or signs of chronic heart failure exhibited a decrease in QOL significantly more often (p&lt;0,001). The leading causes of worse QOL were health changes in 56,3±4,0% of the patients, psychoemotional disorders in 77,5±3,4%, autonomic dysfunction in 81,5±3,2%, reduced adjustment in 82,8±3,1%, and pathological changes in cardiovascular function in 84,1±3,0%, as indicated by ECG, 24-hour ECG monitoring, and Doppler echocardiography.

Structured palliative care program found to be helpful for caregivers of patients with lung cancer

Structured palliative care program found to be helpful for caregivers of patients with lung cancer

Feasibility of a palliative care intervention for cancer patients in Phase I clinical trials.

Cancer patients with advanced disease who have exhausted most treatment options are often offered participation in Phase I clinical trials. To date, studies that assess the benefits of palliative care provided concurrently in Phase I clinical trial settings are lacking. The overall purpose of this study was to test the feasibility of a palliative care intervention administered concurrently to cancer patients receiving treatment in a Phase I clinical trial. Cancer patients enrolling in a Phase I clinical trial were invited to participate in this study. Patients completed baseline questionnaires prior to treatment initiation that assessed quality of life (QOL), symptom distress, psychological distress, and satisfaction with care. Patients then received the palliative care intervention (PCI), which consisted of comprehensive QOL assessment, care planning for the patient during an interdisciplinary team meeting, and two patient education sessions. Patients were surveyed again at 1 and 2 months following treatment initiation. A total of 14 patients were accrued to the pilot over a 3-month time period, representing 70% of eligible patients. Patient retention was high at 1 month (75%), and had declined at 2 months (50%). Patient outcome measure scores, including symptom distress, psychological distress, and satisfaction with care, were relatively stable over time, except for overall QOL, which declined over time. Concurrent palliative care is feasible for cancer patients treated in Phase I clinical trial settings. A large, multisite randomized controlled trial based on this pilot will be launched to test the efficacy of the intervention in this understudied cancer population.

Assessing quality of life in middle-aged and older adults with HIV: psychometric testing of the WHOQOL-HIV-Bref.

The aim of this study was to test the psychometric properties of the World Health Organization quality of life in HIV infection, abbreviated version (WHOQOL-HIV-Bref) in a sample of human immunodeficiency virus (HIV)-infected patients aged 50 years and older. The sample consisted of 185 patients, recruited in the main departments of infectious diseases of 10 Portuguese hospitals. In addition to the WHOQOL-HIV-Bref, patients also completed the brief symptom inventory, a self-report questionnaire for measuring psychopathological symptoms. The European Portuguese version of WHOQOL-HIV-Bref showed acceptable reliability (Cronbach's alpha range 0.65-0.86 across domains). Confirmatory factor analysis corroborated the original six-domain structure. Convergent validity with depressive and psychopathological symptoms was satisfactory for all domains. Overall quality of life (QoL), physical and independence domains discriminated well subjects considering the HIV stage. None of the domains were significantly different according to CD4+ T cell count subgroups. These results offer promising support for the use of the WHOQOL-HIV-Bref as a measure of QoL among HIV-infected patients aged 50 years and older. Its briefness and multidimensionality allow a more practical and comprehensive assessment of QoL, both on clinical and research settings.

A conceptual definition of quality of life with a left ventricular assist device: Results from a qualitative study

ObjectiveTo develop a conceptual definition of quality of life (QoL) with a left ventricular assist device (LVAD). BackgroundConceptual and operational definitions of QoL with an LVAD are lacking. MethodsA grounded theory method was used. Adult, outpatient LVAD recipients (n = 11) participated twice in individual or paired interviews. ResultsA conceptual definition of QoL while living with an LVAD was established as: “Being well enough to do and enjoy day-to-day activities that are important to me.” Participants described 5 important life domains consistent with QoL literature: physical, emotional, social, cognitive, and spiritual/meaning. However, participants identified unique concerns not addressed by generic or heart failure disease specific measures typically used in the LVAD population. ConclusionExisting generic and heart-failure specific QoL measures are not adequate for understanding QoL among LVAD patients. Cognition and spiritual/meaning domains were significant; these need inclusion for comprehensive QoL assessment in the LVAD population.

Validation of the World Health Organization Quality of Life HIV Instrument in a Zambian Sample

Given the longevity achievable with the current treatment for people living with HIV, quality of life (QOL) has emerged as a significant health outcome measure. The purpose of this study was to test the QOL factor structure in a Zambian sample using the World Health Organization Quality of Life-HIV (WHOQOL-HIV) instrument. A cross-sectional 2 ×2 factorial design was conducted with 160 people living with HIV. Factor analysis yielded 3 new scales: Zambian WHOQOL-HIV, Zambian WHOHIV Medication Dependence, and Zambian WHOHIV spirituality religion personal beliefs (SRPB), and validated the Overall Quality of Life and General Health Perceptions Scale. The study tested the WHOQOL-HIV instrument, validated a scale that can be used for regular assessment, and yielded three comprehensive QOL assessment scales to monitor disease progression and response to care. The assessments will lead to the development of holistic nursing interventions based on perception of QOL.

Instruments for Estimation of Health-Related Quality of Life in Patients with Skull Base Neoplasms

With advances in treatment of patients with tumors of the skull base and associated improvement in length of survival, the need for assessment of quality of life (QOL) is becoming increasingly apparent. A thorough assessment of QOL, including functional, physical, social, and emotional status, as well as disease-specific symptoms, allows for comparison of treatments and informs treatment decisions. In addition, it allows for problems following intervention to be identified and addressed, thereby assisting patients in their pursuits of returning to their normal activities and level of functioning. Although health care providers and researchers are increasingly aware of the need to assess patients' QOL, few standardized measures exist with which to perform a comprehensive assessment of QOL in patients with skull base neoplasms. Further research is needed, including prospective trials using reliable and valid measures tapping various aspects of QOL and specific symptoms unique to patients with tumors of the skull base.

Change in quality of life after combined orthodontic-surgical treatment of dentofacial deformities

To determine changes in quality of life (QoL) after orthodontic-surgical treatment in patients with dentofacial deformities, using generic health, generic oral health, and condition-specific QoL approaches. Patients were evaluated at baseline (T(0)), postoperative 6 weeks (T(1)), postoperative 6 months (T(2)), and after orthodontic treatment (T(3)). Generic health-related QoL, generic oral health-related QoL, and condition-specific QoL were assessed using the 36-item Short Form Health Survey (SF-36), the 14-item Short Form Oral Health Impact Profile (OHIP-14), and the 22-item Orthognathic Quality of Life Questionnaire (OQLQ), respectively. There were significant changes in Physical-Health Component Scores (PCS) (P < .001) and Mental-Health Component Scores (MCS) (P < .01) of SF-36, in OHIP-14 scores (P < .001), and in OQLQ scores (P < .001) during the trajectory of treatment. A transient decrease in PCS was found at T(1) (P < .001) and an increase in MCS was found only at T(3) (P < .05). There was a significant decrease in OHIP-14 scores at T(2) and T(3) (P < .001) and in OQLQ scores at all time points compared with T(0) (P < .05). Significant changes in QoL occurred after orthodontic-surgical treatment. A comprehensive assessment of QoL using generic health, generic oral health, and condition-specific approaches proved to be useful in determining the trajectory of changes.

Impact of Orthognathic Surgery on Quality of Life

To determine changes in quality of life (QOL) following orthognathic surgery in patients with dentofacial deformity, using generic health, generic oral health, and condition-specific QOL approaches. Thirty-six patients were evaluated at baseline presurgical (T(0)), 6 weeks postoperatively (T(1)), and 6 months postoperatively (T(2)). Generic health-related QOL was assessed using the 36-item Short Form Health Survey (SF-36), generic oral health-related QOL was assessed by the 14-item Short Form Oral Health Impact Profile (OHIP-14), and condition-specific QOL was assessed by the 22-item Orthognathic Quality of Life Questionnaire (OQLQ). There was a significant reduction (deterioration) in SF-36 summary physical (P < .01) and mental health scores (P < .001) at 6 weeks after surgery but no significant change in overall OHIP-14 or OQLQ scores. At 6 months after surgery, SF-36 summary scores returned to baseline levels and significant reduction (improvements) in OHIP-14 (P < .001) and OQLQ mean scores (P < .001) were observed. Significant changes in QOL occurred following orthognathic surgery. A marked but transient deterioration in many aspects related to general well being was noted in the early postoperative period and significant improvement was documented by 6 months. A comprehensive assessment of QOL using generic health, generic oral health, and condition-specific approaches proved useful in determining such changes.

Timing of quality of life assessment in cancer clinical trials: fine tuning remains a challenge

Timing of quality of life assessment in cancer clinical trials: fine tuning remains a challenge

Brief comprehensive quality of life assessment after stroke: the assessment of quality of life instrument in the north East melbourne stroke incidence study (NEMESIS).

Generic utility health-related quality of life instruments are useful in assessing stroke outcome because they facilitate a broader description of the disease and outcomes, allow comparisons between diseases, and can be used in cost-benefit analysis. The aim of this study was to validate the Assessment of Quality of Life (AQoL) instrument in a stroke population. Ninety-three patients recruited from the community-based North East Melbourne Stroke Incidence Study between July 13, 1996, and April 30, 1997, were interviewed 3 months after stroke. Validity of the AQoL was assessed by examining associations between the AQoL and comparator instruments: the Medical Outcomes Short-Form Health Survey (SF-36); London Handicap Scale; Barthel Index; National Institutes of Health Stroke Scale; and Irritability, Depression, Anxiety scale. Sensitivity of the AQoL was assessed by comparing AQoL scores from groups of patients categorized by severity of impairment and disability and with total anterior circulation syndrome (TACS) versus non-TACS. Predictive validity was assessed by examining the association between 3-month AQoL scores and outcomes of death or institutionalization 12 months after stroke. Overall AQoL utility scores and individual dimension scores were most highly correlated with relevant scales on the comparator instruments. AQoL scores clearly differentiated between patients in categories of severity of impairment and disability and between patients with TACS and non-TACS. AQoL scores at 3 months after stroke predicted death and institutionalization at 12 months. The AQoL demonstrated strong psychometric properties and appears to be a valid and sensitive measure of health-related QoL after stroke.

Assessing quality of life in patients with epilepsy.

The importance of quality-of-life (QOL) assessments in providing quantified information about the impact of chronic illness and its treatment is now generally accepted. For epilepsy, QOL assessment is a relatively recent development, but it is increasingly included within clinical trial protocols. Clinical trials in epilepsy that have included a comprehensive QOL assessment, although still relatively few in number, have examined the effectiveness both of broad management policies and of individual drug therapies. There are a number of important conceptual, methodological and practical issues behind the measurement of quality of life as an outcome of care in epilepsy that are being addressed through current efforts to develop standardised QOL instruments. In trying to assess quality of life in epilepsy, as in any other condition, it is important to satisfy the universal requirements of a scientific instrument-that it be valid, reliable, sensitive in change and practical. To date, the main 'formal' approaches to QOL assessment in epilepsy have involved the development of a novel QOL measure from first principles, customising of a previously developed generic measure, identification of a battery of generic and disease-specific scales addressing specific QOL domains, and adoption of an individual patient-generated approach. These various efforts have produced a battery of potentially valuable tools and approaches. Although QOL assessment is now mainly on the epilepsy research agenda, some important challenges remain to be met. These include the development of comprehensive, age-related measures for children with epilepsy, further investigation of the psychometric properties of the available measures for adults, issues of cross-cultural application and use with proxy informants, and the development of utility-based measures.

?Fatigue and malaise? as a quality-of-life indicator in small-cell lung cancer patients

"Fatigue and malaise" (FM) is a frequent, non-specific symptom of cancer patients caused by the disease, its treatment and psychological distress. Since comprehensive quality of life assessment is often not feasible in multicentre clinical trials, short, but clinically relevant, quality of life indicators have to be defined. In a representative subsample of 127 patients in a phase-III randomized small-cell lung cancer trial comparing two different regimens of combination chemotherapy, quality of life was assessed at the beginning of each of the six treatment cycles with a self-rating questionnaire including an early version of the EORTC questionnaire, a mood adjective check list (Bf-S) and a single linear-analogue self-assessment scale (LASA) measuring general well-being. FM, measured with a five-item Likert subscale of the EORTC questionnaire, showed moderate to high intercorrelations with other EORTC subscales assessing disease symptoms, toxicity of treatment, role functioning, personal functioning, restriction of social activity, psychological distress, emotional (Bf-S) and general well-being (LASA). At baseline, FM was one of the most pronounced symptoms. Over the six cycles 43%-31% of the patients complained of moderate to severe fatigue. Over the first two cycles FM tended to decrease, slightly increasing during cycles 3 and 4 and decreasing again before cycle 6. In a multiple regression analysis over the six cycles, 53% of the variance of FM was explained by patient-rated symptoms of disease and toxicity (disease alone: 43%; toxicity alone: 35%). Initial performance status, previous weight loss, treatment arm, cycle number and age predicted the scores of FM over the six cycles.(ABSTRACT TRUNCATED AT 250 WORDS)

Psychosomatic Aspects of Patients on Hemodialysis

The relationship between quality of life (QOL) and alexithymia was examined in dialysis patients. Hemodialysis (HD) patients with diabetic nephropathy had poor QOL in medical dimension. Although they had good QOL in psychological and social dimensions, a high prevalence of alexithymia associated with self-control ability was observed. These results suggest that their inability to care for themselves was reflected in poor medical dimension, and that good psychological and social dimensions were merely an outward appearance. Therefore, identification of alexithymia in dialysis patients is important along with a three-dimensional evaluation of QOL. Multidisciplinary comprehensive assessment of QOL including alexithymia will lead to a real improvement of dialysis patients' QOL.