Interpretation Of Health-related Quality Of Life Research Articles

A short scale to measure health-related quality of life after traumatic brain injury in children and adolescents (QOLIBRI-OS-KID/ADO): psychometric properties and German reference values

PurposeThe impact of pediatric traumatic brain injury (pTBI) on health-related quality of life (HRQoL) in children and adolescents remains understudied. Short scales have some advantages in terms of economy and administration over longer scales, especially in younger children. The aim of the present study is to psychometrically evaluate the six-item German version of the QOLIBRI-OS-KID/ADO scale for children and adolescents. In addition, reference values from a general German pediatric population are obtained to assist clinicians and researchers in the interpretation of HRQoL after pTBI.MethodsA total of 297 individuals after TBI and 1997 from a general population sample completed the questionnaire. Reliability, validity, and comparability of the assessed construct were examined.ResultsThe questionnaire showed satisfactory reliability (α = 0.75 and ω = 0.81 and α = 0.85 and ω = 0.86 for the TBI and general population samples, respectively). The QOLIBRI-OS-KID/ADO was highly correlated with its long version (R2 = 67%) and showed an overlap with disease-specific HRQoL (R2 = 55%) in the TBI sample. The one-dimensional factorial structure could be replicated and tested for measurement invariance between samples, indicating a comparable HRQoL construct assessment. Therefore, reference values and cut-offs indicating clinically relevant impairment could be provided using percentiles stratified by factors significantly associated with the total score in the regression analyses (i.e., age group and gender).ConclusionIn combination with the cut-offs, the QOLIBRI-OS-KID/ADO provides a cost-effective screening tool, complemented by interpretation guidelines, which may help to draw clinical conclusions and indications such as further administration of a longer version of the instrument to gain more detailed insight into impaired HRQoL domains or omission of further steps in the absence of an indication.

Systematic review reveals lack of quality in reporting health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours.

BackgroundGastroenteropancreatic neuroendocrine tumours (GEP-NET) are often slow-growing and patients may live for years with metastasised disease. Hence, along with increasing overall and progression-free survival, treatments aim at preserving patients’ well-being and health-related quality of life (HRQoL). However, studies on systematic HRQoL assessment in patients with GEP-NET are scarce. Therefore, the purpose of the current review is to systematically evaluate the methodological quality of the identified studies.MethodsA targeted database search was performed in PubMed, EMBASE, and CENTRAL. Data extraction was conducted by two independent researchers according to predefined criteria. For study evaluation, the Minimum Standard Checklist for Evaluating HRQoL Outcomes in Cancer Clinical Trials and the CONSORT Patient-Reported Outcome extension were adapted.ResultsThe database search yielded 48 eligible studies. We found the awareness for the need of HRQoL measurement to be growing and application of cancer-specific instruments gaining acceptance. Overall, studies were too heterogeneous in terms of patient characteristics and treatment interventions to draw clear conclusions for clinical practice. More importantly, a range of methodological shortcomings has been identified which were mainly related to the assessment and statistical analysis, as well as the reporting and interpretation of HRQoL data.ConclusionDespite an increasing interest in HRQoL in GEP-NET patients, there is still a lack of knowledge on this issue. A transfer of HRQoL results into clinical practice is hindered not only by the scarceness of studies, but also by the often limited quality of HRQoL processing and reporting.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-016-0527-2) contains supplementary material, which is available to authorized users.

Stability of health-related quality of life in the Norwegian general population and impact of chronic morbidity in individuals with and without a cancer diagnosis

The stability of Health-Related Quality of Life (HRQoL) in the general population (GenPop) over years has rarely been evaluated. Neither has the impact of chronic morbidity on HRQoL in cancer survivors been extensively assessed, when identified in the Norwegian GenPop. We studied both aspects. HRQoL was evaluated in two GenPop surveys in 1996 and 2004 using the EORTC QLQ-C30. The 2004 survey included self-reports of a malignant diagnosis and use of medication for hypertension, diabetes mellitus and/or anxiety/depression. Comparison of the results from both surveys revealed similarity of the HRQoL profiles of the two surveys and confirmed the associations between HRQoL and age and gender. Cancer survivors and individuals from the GenPop without chronic co-morbidity had similar HRQoL, except for poorer physical and role function in cancer survivors (p <0.01). HRQoL worsened significantly if a cancer survivor suffered from chronic co-morbidity. Multivariate analyses confirmed the associations between HRQoL and chronic common co-morbidity in cancer survivors and non-cancer persons. As common chronic co-morbidity significantly impairs HRQoL in cancer survivors, prevention of adverse health conditions represents a major challenge in such survivors. Further, in the interpretation of HRQoL in cancer survivors‘ co-morbid conditions and socio-demographic variables must be considered. Over an 8 years period the HRQoL of the Norwegian GenPop appeared to be stable.

PSYCHOSOCIAL FACTORS IN PATIENTS WITH CHRONIC KIDNEY DISEASE: Health‐Related Quality of Life in Nephrology Research and Clinical Practice

ABSTRACTPhysical, psychosocial, and lifestyle disturbances, along with physical and emotional symptoms, have been shown to impact the health‐related quality of life (HRQOL) of those dependent on renal replacement therapy. The value of HRQOL measurement as a tool to improve clinical care has been recognized by patients, clinical investigators, and health care providers. The potential importance of HRQOL assessment lies in the additional information it provides and the impact it has on the clinical decision‐making process between a patient and a physician. There remain a multitude of challenges facing renal providers who wish to incorporate HRQOL measurement to improve patient care. These challenges include the clinician's understanding of the conceptual model of HRQOL, the quality of the scientific process that contributed to the current literature on HRQOL, a willingness of the clinician to incorporate HRQOL information into clinical practice, and the logistic difficulties of collecting and applying HRQOL data in a busy practice setting. Arguably, optimizing HRQOL may be the most substantial impact the health care team will have on the person with kidney failure. In order to implement HRQOL assessment at the point of care, providers may consider using computer adaptive testing and scoring algorithms using item response theory, which will allow adequate reliability for interpretation of change among individuals. Moreover, the effective assessment and interpretation of HRQOL will be aided by continued publication of norms, outcomes of randomized controlled trials, and continued experience of investigators and clinicians.

Analysis and interpretation of health-related quality-of-life data from clinical trials: basic approach of The National Cancer Institute of Canada Clinical Trials Group

Clinicians are being confronted with increasing amounts of health-related quality of life (HRQOL) data. Thus, there is a need for a greater understanding of the analysis and interpretation of HRQOL so that the data can be reported in an appropriate manner. The approach of the Clinical Trials Group of the National Cancer Institute of Canada emphasises the clinical meaning of the results, while avoiding complex statistical modelling. It consists of four steps: calculating the questionnaire completion rates, calculating the baseline scores, determining the individual change in scores over time for the domains specified in the trial hypothesis, and culminates in determining the proportions of patients who have reported clinically meaningful changes in scores since baseline. A rationale supporting each step is given. This approach is presented as a simple and practical aid to the analysis, interpretation and reporting of HRQOL results.

Hi! How are you? Response shift, implicit theories and differing epistemologies.

Measures of Health Related Quality of Life (HRQL) occupy a continuum, from highly standardized econometric methods such as the time tradeoff and standard gamble to individualized global measures. Each has its vocal adherents, each involves different assumptions about the nature and interpretation of HRQL, and each has potential advantages and disadvantages. In this paper, I begin by exploring two theories which attempt to explain how people make assessments of health over time: 'response shift' and the 'implicit theory of change' model. I show that the theories, which are based on different views of the underlying cognitive processes, make opposite predictions about the validity of prospective and retrospective judgments. I examine the broader issue of individualized vs. standardized questions, and discuss a fundamental epistemological difference which places the current discussion in a broader philosophical context. I propose that a partial resolution may arise from a more careful consideration of the goals of HRQL assessment in a particular situation.