Disease-specific Measure Of Quality Research Articles

The sensitivity to change of the cluster headache quality of life scale assessed before and after deep brain stimulation of the ventral tegmental area

BackgroundCluster headache (CH) is a trigeminal autonomic cephalalgia (TAC) characterized by a highly disabling headache that negatively impacts quality of life and causes limitations in daily functioning as well as social functioning and family life. Since specific measures to assess the quality of life (QoL) in TACs are lacking, we recently developed and validated the cluster headache quality of life scale (CH-QoL). The sensitivity of CH-QoL to change after a medical intervention has not been evaluated yet.MethodsThis study aimed to test the sensitivity to change of the CH-QoL in CH. Specifically we aimed to (i) assess the sensitivity of CH-QoL to change before and following deep brain stimulation of the ventral tegmental area (VTA-DBS), (ii) evaluate the relationship of changes on CH-QoL with changes in other generic measures of quality of life, as well as indices of mood and pain. Ten consecutive CH patients completed the CH-QoL and underwent neuropsychological assessment before and after VTA-DBS. The patients were evaluated on headache frequency, severity, and load (HAL) as well as on tests of generic quality of life (Short Form-36 (SF-36)), mood (Beck Depression Inventory, Hospital Anxiety and Depression Rating Scale), and pain (McGill Pain Questionnaire, Headache Impact Test, Pain Behaviour Checklist).ResultsThe CH-QoL total score was significantly reduced after compared to before VTA-DBS. Changes in the CH-QoL total score correlated significantly and negatively with changes in HAL, the SF-36, and positively and significantly with depression and the evaluative domain on the McGill Pain Questionnaire.ConclusionsOur findings demonstrate that changes after VTA-DBS in CH-QoL total scores are associated with the reduction of frequency, duration, and severity of headache attacks after surgery. Moreover, post VTA-DBS improvement in CH-QoL scores is associated with an amelioration in quality of life assessed with generic measures, a reduction of depressive symptoms, and evaluative pain experience after VTA-DBS. These results support the sensitivity to change of the CH-QoL and further demonstrate the validity and applicability of CH-QoL as a disease specific measure of quality of life for CH.

Relationship Between Disease Specific Quality of Life Measures, Physical Performance, and Activity in People with Intermittent Claudication Caused by Peripheral Artery Disease

The aims of this study were firstly to assess the correlation between disease specific measures of quality of life (QOL) and physical performance and activity, and secondly to identify demographic, clinical, functional, and physical activity measures independently associated with QOL in people with intermittent claudication. This was a cross sectional observational study of 198 people with intermittent claudication caused by peripheral artery disease who were recruited prospectively. QOL was assessed with the intermittent claudication questionnaire (ICQ) and the eight-theme peripheral artery disease quality of life questionnaire. Physical performance was assessed with the six minute walk test (6MWT) and short physical performance battery (SPPB), and an accelerometer was used to measure seven day step count. The associations between QOL scores and 6MWT distance, SPPB scores and seven day step count were examined using Spearman Rho's (ρ) correlation and multivariable linear regression. ICQ scores were significantly correlated with 6MWT distance (ρ=0.472, p<.001), all four SPPB scores (balance ρ=0.207, p=.003; gait speed ρ=0.303, p<.001; chair stand ρ=0.167, p=.018; total ρ=0.265, p<.001), and seven day step count (ρ=0.254, p<.001). PADQOL social relationships and interactions (ρ=0.343, p<.001) and symptoms and limitations in physical functioning (ρ=0.355, p<.001) themes were correlated with 6MWT distance. The 6MWT distance was independently positively associated with ICQ and both PADQOL theme scores (ICQ: B 0.069, p<.001; PADQOL social relationships and interactions: B 0.077, p<.001; PADQOL symptoms and limitations in physical functioning: B 0.069, p<.001). Longer 6MWT distance independently predicted better physical and social aspects of QOL in people with intermittent claudication supporting its value as an outcome measure.

Psychometric and Clinimetric Validity of the Modified 25-Item Sino-Nasal Outcome Test.

BackgroundProductivity losses are a significant part of the disease burden associated with rhinosinusitis, but existing measures of disease-specific quality of life exclude explicit assessment of the impact of the disease on productivity.ObjectiveThe objective of this study was to evaluate the clinimetric and psychometric validity of the 25-item Sino-Nasal Outcome Test (SNOT-25), a modified version of the SNOT-22.MethodsThis was a prospective cohort study conducted at an academic medical center. Participants included adult patients with rhinosinusitis who presented for routine visits to the Washington University in St. Louis School of Medicine otolaryngology clinic between August 2016 and March 2017.ResultsThe SNOT-25 was created with the addition of three productivity-specific items to the SNOT-22 instrument. A total of 120 rhinosinusitis patients completed all baseline measurements and 94 (78.3%) completed 3-month follow-up. The Cronbach’s α was 0.83, indicating high internal consistency. Rhinosinusitis patients had on average a 24-point higher baseline SNOT-25 score (95% confidence interval [CI]: 13–35) as compared to healthy controls indicating good discriminative validity. There was high correlation between SNOT-25 scores at 3 months and 3.5 months ( r = .81; 95% CI, 0.73–0.87) confirming strong test–retest reliability. SNOT-25 had a strong correlation with the overall score of the Nasal Obstruction Symptom Evaluation instrument ( r = .55; 95% CI, 0.42–0.65), and among Short Form-36 subscales, the strongest correlations existed between SNOT-25 and the fatigue scale ( r = −.522; 95% CI, −0.63 to −0.39). Exploratory factor analysis revealed that the 3 new questions of SNOT-25 loaded together with reduction in productivity and concentration items on a new “productivity” factor.ConclusionThe SNOT-25 is a valid instrument that can be used to assess rhinosinusitis disease burden including the impact on productivity and may be a better predictor of treatment decisions and outcomes.

What is unique about quality of life in motor neurone disease? A qualitative query

Background: Quality of Life (QoL) is an important consequence in neurological clinical care. The debate about generic and disease specific measures of quality of life reflects uncertainty about whether there are unique aspects to understanding QoL in different diseases. If there are commonalities to different disabling neurological diseases, it may be credible to extrapolate from more common and better-studied conditions, like multiple sclerosis (MS) to rarer diseases like motor neurone disease (MND). Distinctions across neurological conditions would suggest that strategies to maximise QoL must be disease specific. Objectives: In this analysis our aim was to explore psychosocial factors affecting QoL in MND in comparison with MS. Methods: The study employed both semi-structured interviews and focus groups. Each focus group was consisted of either MND or MS. All interviews and group discussions were audio recorded and transcribed verbatim for a thematic analysis. Themes were inductively developed within a condition before they were compared across the two conditions for cross-sectional exploration. Results: Data was collected from 40 people with MND: 26 interviews (male=14; mean age= 64yrs; mean illness duration=1.6yrs); 14 in focus groups (male=9; mean age=62yrs; mean illness duration=3.5yrs); and from 61 people with MS: 43 interviews (male=16; mean age=52yrs; mean illness duration=15yrs); 18 in focus groups (male=6; mean age=47yrs; mean illness duration=9yrs). A codebook for each condition was developed for the analysis and saturation was achieved in both MND and MS. Whilst the analysis identified the same psychosocial domains to be important for QoL irrespective of disease, there was an aspect unique to MND of it being a terminal condition. Both MS and MND patients valued their lives, but MND patients recognised their shorter life expectancy and differed from MS patients because thoughts of imminent death adversely impacted QoL. Participant’s concerns about their death were not restricted to themselves, but extended to impact on significant others. The differences between MND and MS were further observed with regard to factors that were beneficial to QoL. Although the positive influence of environmental factors and spirituality were found in both conditions, additional implications of these factors were found amongst the MND group: it was found that the importance of environment included the place of death, and spirituality was described to provide hope even beyond death. Discussion and conclusions: The current study reveals complexity in ascertaining QoL across neurological diseases. Despite distinct illness trajectories, the same psychosocial factors were identified to be important for QoL in MND and MS. Nevertheless, MND as a terminal condition was found to further challenge patient’s QoL. The findings confirm the importance of addressing this aspect of the condition in addition to commonly investigated psychosocial factors.

Measuring quality of life in chronic hematologic malignancy: The QUALMS-1.

263 Background: Disease-specific measures of quality of life (QoL) allow for assessment of disease-specific symptoms and psycho-social factors, an especially important endeavor for patients with chronic hematologic malignancies. We aimed to determine if disease-specific QoL could be measured for patients with myelodysplastic syndromes, and what underlying constructs would inform such a measure. Methods: We previously reported on the development of the QUALMS-1, a 33-item QoL tool for MDS patients. 124 MDS patients completed the QUALMS-1 and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Chart review was conducted to collect disease characteristics, lab tests, treatments, transfusions, and use of growth factors. Participants were recruited from MDS centers across the USA, Canada and Italy. QUALMS-1 items were scored on a scale ranging from 1 “Never” to 5 “Always”, with 4 reverse-scored items. Items were averaged to create a preliminary total scale score, with higher scores indicating poorer MDS-specific QoL. Results: Mean total scores on the QUALMS-1 ranged from 1.0 - 3.9. The measure had excellent internal consistency reliability (α=.92) and was moderately correlated with the QLQ-C30’s global health, physical functioning, role functioning, emotional health, cognitive functioning, social functioning, fatigue, nausea and pain measures (r range from 0.34 – 0.65, all p &lt;.01). Patients with Hg &lt;= 10 showed a small but consistent higher QUALMS-1 score (M = 2.5; SD =.59) than those with Hg &gt;10 (M = 2.1; SD =.54; p =.03). Preliminary analyses suggested that four latent factors underlie the QUALMS-1, corresponding to the following subscales: physical burden, disease information and uncertainty, emotional burden, and disease-related positives. Conclusions: Our data suggest that the QUALMS-1 is internally consistent and has construct validity in patients with MDS. The measure provides a unique assessment of disease information and uncertainty, as well as disease-related positives. These are psychosocial constructs that may be particular to chronic hematologic malignancies such as MDS and are not well-assessed by generic or cancer-related measures.

Development of a disease-specific measure of quality of life in myelodysplastic syndromes (MDS): The “QUALMS-1”.

6103 Background: Studies assessing the quality of life (QoL) experienced by patients with MDS have almost universally relied upon generic measures; however, disease-specific QoL tools can allow for more sensitive assessments of the impact of changes in disease status. Methods: Using a clinical impact method of instrument development, individual and combined focus groups were conducted with 32 members of our institution’s MDS community (patients, their caregivers, and health care providers) to identify MDS-relevant QoL domains and associated question topics. Participants’ rankings of the importance of the domains and question topics were compared, collapsing patients/caregivers into one group and physicians/other providers into another. A draft scale was constructed taking a greater number of questions from the more highly-ranked domains. Results: “Fatigue” was ranked as the most important domain (see table). None of the 12 domains were ranked significantly differently by patients/caregivers versus providers. The two groups ranked 5 of 60 question topics differently: “Too tired for routine tasks” (providers higher; p= .05); “limited availability of support beyond the family” (providers higher; p= .02); “organizing life around transfusion/MD appointments” (providers higher, p= .03); “bruising” (patients/caregivers higher, p= .05) and “anger over diagnosis” (providers higher, p= .03). Conclusions: A high level of agreement in the rankings of domains and question topics between MDS patients/caregivers and providers suggests that the QoL experience of MDS patients is consistently compromised. The resulting 38-item draft QUALMS-1 tool is now being piloted (cognitive debriefing and behavioral coding) in a new cohort of MDS patients, with the ultimate goal of validation in a multi-institutional setting. [Table: see text]

Identification of clinically significant psychological distress and psychiatric morbidity by examining quality of life in subjects with occupational asthma

BackgroundThe Juniper Asthma Specific Quality of Life Questionnaire (AQLQ(S)) is a questionnaire that allows measurement of disease specific quality of life. We wanted to examine correlations between the (AQLQ(S)) general and different subscale scores and both psychiatric morbidity and levels of psychological distress in individuals with occupational asthma (OA) and to determine if results in the emotional function subscale allow identification of individuals with clinically significant psychological distress or current psychiatric disorders.MethodsThis was a cross-sectional study of individuals with OA who were assessed during a re-evaluation for permanent disability, after they were no longer exposed to the sensitizing agent. Patients underwent a general sociodemographic and medical history evaluation, a brief psychiatric interview (Primary Care Evaluation of Mental Disorders, PRIME-MD) and completed a battery of questionnaires including the AQLQ(S), the St-Georges Respiratory Questionnaire (SGRQ), and the Psychiatric Symptom Index (PSI).ResultsThere was good internal consistency (Cronbach alpha = 0.936 for the AQLQ(S) total score) and construct validity for the AQLQ(S) (Spearman rho = -0.693 for the SGRQ symptom score and rho = -0.650 for the asthma severity score). There were medium to large correlations between the total score of the AQLQ(S) and the SGRQ symptom score (r = -.693), and PSI total (r = -.619) and subscale scores (including depression, r = -.419; anxiety, r = -.664; anger, r = -.367; cognitive disturbances, r = -.419). A cut-off of 5.1 on the AQLQ(S) emotional function subscale (where 0 = high impairment and 7 = no impairment) had the best discriminative value to distinguish individuals with or without clinically significant psychiatric distress according to the PSI, and a cut-off of 4.7 best distinguished individuals with or without a current psychiatric disorder according to the PRIME-MD.ConclusionsImpaired quality of life is associated with psychological distress and psychiatric disorders in individuals with OA. Findings suggest that the AQLQ(S) questionnaire may be used to identify patients with potentially clinically significant levels of psychological distress.

Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL)

Because there is no muscle disease specific measure of quality of life (QoL), we wanted to develop and validate an individualized muscle disease specific measure of QoL for adults suitable for both clinical and research use. A literature review exploring QoL and its measurement resulted in the development of a theoretical model of QoL. This was used alongside qualitative interviews (n = 41) and a postal survey (n = 252) to design a questionnaire. The psychometric properties, validity (n = 95), reliability (n = 40), and responsiveness (n = 25) of the scale were assessed. The Individualized Neuromuscular Quality of Life questionnaire (INQoL) consists of 45 questions within 10 sections. Four of these focus on the impact of key muscle disease symptoms (weakness, locking [i.e., myotonia], pain, and fatigue), five look at the impact (degree and importance of impact) muscle disease has on particular areas of life, and one section asks about the positive and negative effects of treatment. The questionnaire is structured to allow for variations in the individual characteristics that influence quality of life. Psychometric evaluation established construct validity and test-retest reliability. A preliminary assessment of responsiveness was obtained. The Individualized Neuromuscular Quality of Life is a validated muscle disease specific measure of quality of life developed from the experiences of patients with muscle disease and can be used for individuals or large samples.

35: Development and Validation of the Bladder Cancer Index (BCI): A Disease Specific Measure of Quality of life

You have accessJournal of UrologyDiscussed Poster, Saturday, May 20, 2006, 1:00 - 4:00 pm1 Apr 200635: Development and Validation of the Bladder Cancer Index (BCI): A Disease Specific Measure of Quality of life John T. Wei, Rodney L. Dunn, Scott M. Gilbert, James E. Montie, and David P. Wood John T. WeiJohn T. Wei More articles by this author , Rodney L. DunnRodney L. Dunn More articles by this author , Scott M. GilbertScott M. Gilbert More articles by this author , James E. MontieJames E. Montie More articles by this author , and David P. WoodDavid P. Wood More articles by this author View All Author Informationhttps://doi.org/10.1016/S0022-5347(18)32302-4AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail "35: Development and Validation of the Bladder Cancer Index (BCI): A Disease Specific Measure of Quality of life." The Journal of Urology, 175(4S), pp. 12–13 © 2016 by American Urological AssociationFiguresReferencesRelatedDetails Volume 175Issue 4SApril 2006Page: 12-13 Advertisement Copyright & Permissions© 2016 by American Urological AssociationMetricsAuthor Information John T. Wei More articles by this author Rodney L. Dunn More articles by this author Scott M. Gilbert More articles by this author James E. Montie More articles by this author David P. Wood More articles by this author Expand All Advertisement Loading ...

What Makes Crohn's Disease Patients Difficult to Manage? The Role of Psychosocial Factors

Most GI clinicians face the problem of a small group Crohn's Disease (CD) patients who function poorly and consume inordinate amounts of service with poor outcome. This study examines the hypothesis that psychosocial factors differentiate the CD patients who function poorly from the typical CD patient. A prototypal sample of CD patients with problems functioning, more typical CD patients (not selected for having problems in functioning), and healthy controls each completed a battery of validated psychosocial measures of disease-specific quality of life, coping skills, social support and life stress, perceived medical symptoms and life history factors. Chart data on hospital admissions, ER, GI, Surgeon, and GP visits were also collected. The CD patients with problems functioning reported more symptoms (GI and non-GI) and had many more ER, GI, and GP visits than the typical group. Psychologically, those with problems functioning had poorer quality of life and were more likely to cope using emotional discharge and support seeking. They experienced significantly more stress and reported a more chaotic family history. No differences on an experimental method of information processing biases were found between the CD groups, however. These results indicated that patients with problems functioning, selected by GI staff because they were best-case examples of functional difficulties, shared little with a matched group of typical CD patients. These patients likely require psychological as well as medical intervention to best manage their illness.

A review of measures of quality of life for children with chronic illness

AIMSTo identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures.METHODSSystematic...

Developing a model of quality of life in epilepsy: the contribution of neuropsychology.

Three specific issues must be considered in the development of a quality-of-life in epilepsy model and psychometric instrument. These issues are: (a) whether to adopt a narrow versus broad model of quality of life, (b) whether to rely on patient self-reports of quality of life or reports garnered from proxies, and (c) whether to develop a generic versus disease-specific measure of quality of life. In reviewing these issues the contributions of the health services research field, research pertaining to the psychological and social effects of epilepsy, and especially neuropsychology, are pertinent.