scholarly journals Measurement of Quality of Life in Patients with Mycosis Fungoides/Sézary Syndrome Cutaneous T-Cell Lymphoma: Development of an Electronic Instrument (Preprint)

2018 ◽  
Author(s):  
Stacey McCaffrey ◽  
Ryan A Black ◽  
Mitchell Nagao ◽  
Marjan Sepassi ◽  
Gaurav Sharma ◽  
...  

BACKGROUND Although the quality of life (QoL) plays an important role in treatment decision making and clinical management of mycosis fungoides (MF) or Sézary syndrome (SS) subtypes of cutaneous T-cell lymphomas (MF/SS-CTCLs), an MF- or SS-specific measure of QoL does not exist. OBJECTIVE The objective of this research was to develop and validate the first QoL instrument for MF/SS-CTCL using a patient-centered approach. METHODS A conceptual framework for the MF/SS-CTCL QoL was developed through a literature review and interviews with key opinion leaders. Concept elicitation with patients was utilized to refine the conceptual model and generate preliminary items. The items were then revised based on qualitative and quantitative feedback obtained through cognitive debriefing surveys and interviews with patients. Next, participants (N=126) completed the preliminary MF/SS-CTCL QoL and a comparator measure of health-related QoL (Skindex-29) through the PatientsLikeMe Open Research Exchange. The MF/SS-CTCL QoL was completed again 5 days later by 66 participants for the purposes of evaluating test-retest reliability. The MF/SS-CTCL QoL was finalized based on results from an empirical evaluation, which included both classical and modern test theory approaches. Specifically, this included evaluation of (1) the optimal item response theory measurement model; (2) item fit; (3) unidimensionality; (4) rating scale performance; (5) reliability; (6) test information (precision); (7) person-to-item map; (8) convergent and discriminant validity; and (9) presence of bias via differential item function. RESULTS Results from the comprehensive psychometric evaluation utilizing a Rasch-Grouped Rating Scale model yielded a final 12-item instrument. The rating scale functioned as expected, and the instrument exhibited adequate person reliability (.87), good to excellent test-retest reliability (r=.89, P<.001), high levels of measurement precision, and good person-to-item targeting. The correlation between the MF/SS-CTCL QoL and the Skindex-29 (r=.852, P<.001) was significantly greater than the correlation between the MF/SS-CTCL QoL and syndrome stage (r=.260, P<.001), providing support for convergent and discriminant validity. Items did not show significant bias based on gender, age, or race. Rasch scores were converted to scaled scores with qualitative descriptive categories for ease of interpretation. CONCLUSIONS Empirical evaluation demonstrated strong evidence of excellent psychometric properties. Utilizing a patient-centered measure development approach ensures that this QoL instrument captures the information that is most meaningful and clinically relevant to patients.

2014 ◽  
Vol 3 (3) ◽  
pp. 179
Author(s):  
Adnan Adnan ◽  
Dyah Aryani Perwitasari ◽  
Ully Adhie Mulyani

Tuberculosis (TB) is one of the disease as the highest contributor to the disease burden in Indonesia. Tuberculosis can affect the patients’ quality of life, such as psychological, physical, and social functioning. St. George's Respiratory Questionnaire (SGRQ) is a special instrument which was widely used to measure the patients’ quality of life with respiratory disease. The objective of this study was to validate the Indonesian version of the SGRQ as instrument to collect data. A descriptive cross section design with 61 subjects was conducted at the Pulmonary Clinics and Primary Health Centers in the region of Yogyakarta within 3 months. The validation process included the known group validity, convergent and discriminant validity and factor analysis. There were 14 items question numbers which did not meet the criteria for convergent validity and 9 items which did not meet the criteria for discriminant validity. Known group validity analysis on gender showed that of the three domains of SGRQ, the activity domain gave statistically significant result. The factor analysis showed the result of Kaiser Meyer Olkin analysis (KMO) was less than 0.5. With a few modifications, the Indonesian version of SGRQ is valid and reliable for measuring quality of life in tuberculosis patients.


2019 ◽  
Author(s):  
Stacey McCaffrey ◽  
Ryan A. Black ◽  
Mitchell Nagao ◽  
Marjan Sepassi ◽  
Gaurav Sharma ◽  
...  

Burns ◽  
2017 ◽  
Vol 43 (1) ◽  
pp. 84-92 ◽  
Author(s):  
Jill Meirte ◽  
Ulrike Van Daele ◽  
Koen Maertens ◽  
Peter Moortgat ◽  
Rudi Deleus ◽  
...  

2020 ◽  
Vol 59 (3) ◽  
pp. 120-127
Author(s):  
Domen Vozel ◽  
Nejc Steiner ◽  
Nina Božanić Urbančič ◽  
Dejan Mladenov ◽  
Saba Battelino

AbstractPurposeTo provide physicians and patients with the tools needed to evaluate patients’ problems and health-related quality of life by cross-culturally adapting and validating the Chronic Otitis Media Questionnaire 12 (COMQ-12), the Dizziness Handicap Inventory (DHI), the Neuropsychological Vertigo Inventory (NVI) and the Tinnitus Handicap Inventory (THI).Materials and methodsCOMQ-12, DHI, NVI and THI were translated into the Slovenian language and completed by patients treated at our department for chronic otitis media, vertigo or tinnitus. The control group for each questionnaire consisted of healthy volunteers. Internal consistency, test-retest reliability, discriminant validity, diagnostic accuracy and cut-off value were determined for each questionnaire.ResultsTest-retest reliability was excellent for DHI (ICC A=0.946) and NVI (p=0.315, ICC A=0.975), good to excellent for COMQ-12 (p=0.680, ICC A=0.858) and satisfactory for THI (p=0.120). Discriminant validity was confirmed for each questionnaire (p>0.05) using the Mann-Whitney U test (COMQ-12, DHI, THI) or the Welch t-test (NVI). COMQ-12 had acceptable (α=0.796) and DHI (α=0.910), NVI (α=0.950) and THI (α=0.924) perfect internal consistency. COMQ-12 and DHI had excellent, NVI acceptable and THI perfect diagnostic accuracy (AUC=0.987, AUC=0.999, AUC=0.781 and AUC=1.000 respectively). Cut-off values determined by Youden’s index were 7, 7, 9 and 56 for COMQ-12, THI, DHI and NVI, respectively.ConclusionSlovenian COMQ-12, DHI, NVI and THI are a valid and accurate tool for the diagnosis and measurement of health-related quality of life in patients with chronic otitis media, vertigo and tinnitus. They could aid general practitioners, occupational health specialists, neurologists and otorhinolaryngologists.


2014 ◽  
Vol 3 (3) ◽  
pp. 179 ◽  
Author(s):  
Adnan Adnan ◽  
Dyah Aryani Perwitasari ◽  
Ully Adhie Mulyani

Tuberculosis (TB) is one of the disease as the highest contributor to the disease burden in Indonesia. Tuberculosis can affect the patients’ quality of life, such as psychological, physical, and social functioning. St. George's Respiratory Questionnaire (SGRQ) is a special instrument which was widely used to measure the patients’ quality of life with respiratory disease. The objective of this study was to validate the Indonesian version of the SGRQ as instrument to collect data. A descriptive cross section design with 61 subjects was conducted at the Pulmonary Clinics and Primary Health Centers in the region of Yogyakarta within 3 months. The validation process included the known group validity, convergent and discriminant validity and factor analysis. There were 14 items question numbers which did not meet the criteria for convergent validity and 9 items which did not meet the criteria for discriminant validity. Known group validity analysis on gender showed that of the three domains of SGRQ, the activity domain gave statistically significant result. The factor analysis showed the result of Kaiser Meyer Olkin analysis (KMO) was less than 0.5. With a few modifications, the Indonesian version of SGRQ is valid and reliable for measuring quality of life in tuberculosis patients.


2015 ◽  
Vol 40 (3-4) ◽  
pp. 233-242 ◽  
Author(s):  
Irene Røen ◽  
Geir Selbæk ◽  
Øyvind Kirkevold ◽  
Knut Engedal ◽  
Anners Lerdal ◽  
...  

Aim: To translate the Quality of Life in Late-Stage Dementia (QUALID) Scale into Norwegian, and to evaluate the test-retest reliability and validity of the scale. Method: QUALID was translated according to standardised procedures. Residents with dementia living in nursing homes were included in the study and assessed using QUALID, Cornell Scale for Depression in Dementia, Neuropsychiatric Inventory, Physical Self-Maintenance Scale and Clinical Dementia Rating Scale. Results: Cronbach's α of QUALID was 0.79. In the reliability study, the intra-class correlation was 0.83. The validity study showed a strong association between depressive symptoms and QUALID, and a moderate association between QUALID and assessments of level of functioning and agitation. Conclusions: The Norwegian version of QUALID is a reliable and valid scale for assessing quality of life in nursing home residents with dementia.


2001 ◽  
Vol 7 (2) ◽  
pp. 119-130 ◽  
Author(s):  
S M Gold ◽  
C Heesen ◽  
H Schulz ◽  
U Guder ◽  
A Mönch ◽  
...  

Quality of life (QoL) is discussed as an additional outcome measure in multiple sclerosis (MS). However, few questionnaires assessing disease specific QoL in MS have been published. On the basis of the literature and interviews with clinicians and MS patients, we have developed a disease specific QoL instrument and validated it in a broad range of patients with MS. In this study, a heterogeneous sample of n=237 MS patients completed the newly developed Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS, in German language) and a battery of already validated questionnaires. They further underwent neurological scoring and objective tests. By these means, we investigated its validity, appropriateness, internal consistency, and retest reliability. Internal consistency and retest coefficients were high and satisfied psychometric standards. Convergent and discriminant validity was supported by direction, magnitude and pattern of correlations with other health measures. HAQUAMS subscales and its total score distinguished between patient groups of varied disease severity, cognitive impairment, and affective symptomatology. No floor or ceiling effects were found in either of the HAQUAMS subscales. The HAQUAMS is a reliable, valid and appropriate instrument for QoL assessment in multiple sclerosis. Data of responsiveness are currently being obtained.


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