A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients.
ABSTRACT: The overall aim of this scoping review of the literature is twofold: (1) to provide an overview of all instruments that have been used to assess health-related quality of life (HRQoL) after solid organ transplantation and (2) to provide a list of health items they include to support future studies on the development of a new-generation HRQoL instrument. All studies that administered any form of HRQoL instrument to post-transplant solid organ recipients were identified in a comprehensive search of PubMed (MEDLINE), Embase, and Web of Science, with a cut-off date of May 2018. The search used various combinations of the following keywords: lung, heart, liver, kidney, or pancreas transplantation; quality of life; well-being; patient-reported outcome; instrument; questionnaire; and health survey. In total, 8013 distinct publications were identified and 1218 of these were selected for review. Among the instruments applied, 53 measured generic, 51 organ-specific, 271 domain-specific, and 43 transplant-specific HRQoL. A total of 78 distinct health items grouped into 16 sub-domains were identified and depicted graphically. The majority of publications did not report a logical rationale for the choice of specific HRQoL instrument. The most commonly used types of instruments were generic health instruments, followed by domain-specific instruments. Despite the availability of transplant-specific instruments, few studies applied these types of instruments. Based on the 78 items, further research is planned to develop a patient-centered, transplant-specific HRQoL instrument that is concise, easy to apply (mobile application), and specifically related to the health issues of solid organ recipients.
Project description:<h4>Objectives</h4>Few attempts have been made to develop a generic health-related quality of life (HRQoL) instrument and to examine its validity and reliability in Korea. We aimed to do this in our present study.<h4>Methods</h4>After a literature review of existing generic HRQoL instruments, a focus group discussion, in-depth interviews, and expert consultations, we selected 30 tentative items for a new HRQoL measure. These items were evaluated by assessing their ceiling effects, difficulty, and redundancy in the first survey. To validate the HRQoL instrument that was developed, known-groups validity and convergent/discriminant validity were evaluated and its test-retest reliability was examined in the second survey.<h4>Results</h4>Of the 30 items originally assessed for the HRQoL instrument, four were excluded due to high ceiling effects and six were removed due to redundancy. We ultimately developed a HRQoL instrument with a reduced number of 20 items, known as the Health-related Quality of Life Instrument with 20 items (HINT-20), incorporating physical, mental, social, and positive health dimensions. The results of the HINT-20 for known-groups validity were poorer in women, the elderly, and those with a low income. For convergent/discriminant validity, the correlation coefficients of items (except vitality) in the physical health dimension with the physical component summary of the Short Form 36 version 2 (SF-36v2) were generally higher than the correlations of those items with the mental component summary of the SF-36v2, and vice versa. Regarding test-retest reliability, the intraclass correlation coefficient of the total HINT-20 score was 0.813 (p<0.001).<h4>Conclusions</h4>A novel generic HRQoL instrument, the HINT-20, was developed for the Korean general population and showed acceptable validity and reliability.
Project description:AIM:To describe how generic preference-based health-related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD). METHOD:A systematic search of nine databases identified studies that used generic preference-based HRQoL instruments in children with NDD. Data extracted following the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Review guidelines included type of NDD, instrument used, respondent type, justification, and critical appraisal for these selections. RESULTS:Thirty-six studies were identified: four cost-utility analyses; 15 HRQoL assessments; five economic burden studies; three intervention studies; and nine 'other'. The Health Utilities Index (Mark 2 and Mark 3) and EuroQoL 5D (EQ-5D; three-level EQ-5D, five-level EQ-5D, and the youth version of the EQ-5D) instruments were most frequently used (44% and 31% respectively). The relatively low use of these instruments overall may be due to a lack of psychometric evidence, inconsistency in justification for and lack of clarity on appropriate respondent type and age, and geographical challenges in applying preference weights. INTERPRETATION:This study highlights the dearth of studies using generic preference-based HRQoL instruments in children with NDD. The use of cost-utility analysis in this field is limited and validation of these instruments for children with NDD is needed. The quality of data should be considered before guiding policy and care decisions. WHAT THIS PAPER ADDS:Limited use of generic preference-based health-related quality of life (HRQoL) instruments in studies on children with neurodevelopmental disorders. Only 11% of studies were cost-utility analyses. Inconsistencies in justification for choosing generic preference-based HRQoL instruments and respondent types.
Project description:Background: Schizophrenia negative symptoms (SNS) contribute substantially to poor functional outcomes, loss in productivity and poor quality of life. It is unclear which instruments may be used for assessing quality of life in patients with SNS. Objective: The objective of this review was to identify instruments assessing health-related quality of life (HRQoL) validated in patients with SNS and to assess their level of validation. Data sources: We conducted a systematic literature review in Medline and the ISPOR database in March 2016 to identify studies on the quality of life in patients with SNS published by March 2016. Data extraction: Psychometric properties and validation steps. Data synthesis: After applying inclusion/exclusion criteria, 49 studies were selected for the analysis of HRQoL instruments; however, none of these instruments only addressed patients with SNS. Of these, 19 HRQoL instruments used in patients with schizophrenia or including patients with SNS among others, in the context of instrument validation, were identified (4 generic, 10 non-specific mental health, 5 schizophrenia-specific). Conclusion: No HRQoL instrument has been validated in patients with SNS only; for the remaining instruments identified, it remains unclear whether they were intended to capture HRQoL in patients with SNS.
Project description:Introduction: Due to the necessity of assessing the health-related quality of life (HRQOL) in heart failure (HF) and the increased use of the International Classification of Functioning, Disability, and Health (ICF) for making a content comparison of measurement instruments, the present study aimed to evaluate the relationship between the instruments and ICF. To this aim, the disease-specific HRQOL instruments in HF were identified, and then psychometric properties and content comparison of included instruments were conducted by linking to ICF. Methods: Disease-specific HRQOL instruments in HF were identified through a comprehensive and systematic search strategy. Then, the psychometric properties of included instruments were determined, and their contents were analyzed and compared based on the ICF coding system. In addition, each instrument was independently linked to ICF by two researchers based on standardized linking rules, and finally their degree of agreement was assessed by the Cohen's kappa coefficient. Results: Ten instruments including a total of 247 items and 417 concepts were linked to 124 different ICF categories. Further, 39 (31.5%), 65 (52.5%), 13 (10.4%), and 7 (5.6%) categories were linked to body function, activity and participation, environmental factors, and body structure, respectively. According to the content analysis approach and psychometric properties, the appropriate measurement instruments were Kansas City Cardiomyopathy and Minnesota living with HF questionnaires, respectively. Conclusion: Content comparison provides researchers with valuable information on the instrument heterogeneity and overlapping, which results in selecting the most appropriate measurement instrument based on a specific clinical context.
Project description:<h4>Background</h4>Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption.<h4>Methods</h4>The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children.<h4>Results</h4>HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate.<h4>Conclusion</h4>The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.
Project description:A variety of outcome measures are used in clinical practice and in research to assess patients with amyotrophic lateral sclerosis (ALS). However, there may be discordance between traditional outcome measures such as strength and physical function, and patient-perceived measures of well-being. One such self-perceived measure, reflecting the patient's view, is quality of life (QOL). QOL in patients with severe medical disorder is often underestimated by others. Patients with ALS often have high QOL, and this may persist throughout the disease due to shifting expectations and to reprioritization of factors contributing to QOL. QOL instruments can measure health-related QOL (HRQOL) or global QOL, and can be generic or disease-specific. HRQOL refers primarily to physical and mental health. Global QOL is much broader, and is also determined by non-health-related factors. The choice of a QOL instrument depends on whether the setting is routine patient care or clinical research, whether or not the outcome of a specific intervention is being assessed, and upon the expected efficacy or toxicity of the intervention. Global QOL instruments are best for individual clinical patient care or for comparing groups. HRQOL or a combination of HRQOL and global QOL instruments are most appropriate for assessing specific interventions.
Project description:This study aimed to identify prospective predictors of health-related quality of life (HRQOL) for adolescent solid organ (kidney, liver, heart, lung) transplant recipients.Data regarding demographics, individual/transplant characteristics, and environmental characteristics were gathered from 66 adolescent transplant recipients and their families at baseline and used to predict the physical functioning, mental health, and general health perceptions domains of HRQOL 18 months later.Baseline levels of HRQOL explained the greatest amount of variance in levels of HRQOL at follow-up; however, specific demographic (i.e., income), individual/transplant (i.e., adherence, frequency of rescheduled clinic appointments, and presence of a rejection episode), and environmental factors (i.e., family conflict) contributed to the variance in HRQOL domains beyond baseline levels.This study identified certain modifiable individual and environmental factors and non-modifiable risk factors associated with lower future HRQOL. Transplant centers should begin screening and addressing these factors to potentially improve HRQOL.
Project description:Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality and of loss of disability-adjusted life years worldwide. It often is accompanied by the presence of comorbidity.To systematically review the influence of COPD comorbidity on generic health-related quality of life (HRQoL).A systematic review approach was used to search the databases Pubmed, Embase and Cochrane Library for studies evaluating the influence of comorbidity on HRQoL in COPD. Identified studies were analyzed according to study characteristics, generic HRQoL measurement instrument, COPD severity and comorbid HRQoL impact. Studies using only non-generic instruments were excluded.25 studies met the selection criteria. Seven studies utilized the EQ-5D, six studies each used the SF-36 or SF-12. The remaining studies used one of six other instruments each. Utilities were calculated by four EQ-5D studies and one 15D study. Patient populations covered both early and advanced stages of COPD and ranged from populations with mostly stage 1 and 2 to studies with patients classified mainly stage 3 and 4. Evidence was mainly created for cardiovascular disease, depression and anxiety as well as diabetes but also for quantitative comorbid associations. Strong evidence is pointing towards the significant negative association of depression and anxiety on reduced HRQoL in COPD patients. While all studies found the occurrence of specific comorbidities to decrease HRQoL in COPD patients, the orders of magnitude diverged. Due to different patient populations, different measurement tools and different concomitant diseases the study heterogeneity was high.Facilitating multimorbid intervention guidance, instead of applying a parsimony based single disease paradigm, should constitute an important goal for improving HRQoL of COPD patients in research and in clinical practice.
Project description:BACKGROUND: Multi attribute utility (MAU) instruments are used to include the health related quality of life (HRQoL) in economic evaluations of health programs. Comparative studies suggest different MAU instruments measure related but different constructs. The objective of this paper is to describe the methods employed to achieve content validity in the descriptive system of the Assessment of Quality of Life (AQoL)-6D, MAU instrument. METHODS: The AQoL program introduced the use of psychometric methods in the construction of health related MAU instruments. To develop the AQoL-6D we selected 112 items from previous research, focus groups and expert judgment and administered them to 316 members of the public and 302 hospital patients. The search for content validity across a broad spectrum of health states required both formative and reflective modelling. We employed Exploratory Factor Analysis and Structural Equation Modelling (SEM) to meet these dual requirements. RESULTS AND DISCUSSION: The resulting instrument employs 20 items in a multi-tier descriptive system. Latent dimension variables achieve sensitive descriptions of 6 dimensions which, in turn, combine to form a single latent QoL variable. Diagnostic statistics from the SEM analysis are exceptionally good and confirm the hypothesised structure of the model. CONCLUSIONS: The AQoL-6D descriptive system has good psychometric properties. They imply that the instrument has achieved construct validity and provides a sensitive description of HRQoL. This means that it may be used with confidence for measuring health related quality of life and that it is a suitable basis for modelling utilities for inclusion in the economic evaluation of health programs.
Project description:BACKGROUND: The European DISABKIDS project aims to enhance the Health Related Quality of Life (HRQoL) of children and adolescents with chronic medical conditions and their families. We describe the development of the seven cross-nationally tested condition-specific modules of the European DISABKIDS HRQoL instrument in a population of children and adolescents. The condition-specific modules are intended for use in conjunction with the DISABKIDS chronic generic module. METHODS: Focus groups were used to construct the pilot version of the DISABKIDS condition-specific HRQoL modules for asthma, juvenile idiopathic arthritis, atopic dermatitis, cerebral palsy, cystic fibrosis, diabetes and epilepsy. Analyses were conducted on pilot test data in order to construct field test versions of the modules. A series of factor analyses were run, first, to determine potential structures for each condition-specific module, and, secondly, to select a reduced number of items from the pilot test to be included in the field test. Post-field test analyses were conducted to retest the domain structure for the final DISABKIDS condition-specific modules. RESULTS: The DISABKIDS condition-specific modules were tested in a pilot study of 360 respondents, and subsequently in a field test of 1152 respondents in 7 European countries. The final condition-specific modules consist of an 'Impact' domain and an additional domain (e.g. worry, stigma, treatment) with between 10 to 12 items in total. The Cronbach's alpha of the final domains was found to vary from 0.71 to 0.90. CONCLUSION: The condition-specific modules of the DISABKIDS instrument were developed through a step-by-step process including cognitive interview, clinical expertise, factor analysis, correlations and internal consistency. A cross-national pilot and field test were necessary to collect these data. In general, the internal consistency of the domains was satisfactory to high. In future, the DISABKIDS instrument may serve as a useful tool with which to assess HRQoL in children and adolescents with a chronic condition. The condition-specific modules can be used in conjunction with the DISABKIDS chronic generic module.