scholarly journals Psychometrics and Validity of the Survey of Memory-Related Quality of Life in HIV Disease

2019 ◽  
Author(s):  
Kelli L Sullivan ◽  
Paulina A Kulesz ◽  
Steven Paul Woods
Keyword(s):  
Quality Of Life ◽  
Reliability And Validity ◽  
Self Report ◽  
Memory Problems ◽  
Incremental Value ◽  
Related Quality ◽  
And Performance ◽  
Future Work ◽  
The Impact

Abstract Objective Retrospective and prospective memory deficits are associated with lower quality of life (QoL); however, there are no validated measures that comprehensively and directly assess the impact of memory problems on QoL. The Survey of Memory-Related Quality of Life (SMRQoL) was developed as a 30-item questionnaire to measure memory-related QoL. Method Both HIV+ (n = 195) and HIV− (n = 146) participants completed the SMRQoL, a neurocognitive research battery, and validated self-report questionnaires of memory, QoL, and mood. Participants were recruited into younger (age ≤ 40 years) and older (age ≥ 50 years) groups per the parent study design. Results The SMRQoL had a unidimensional factor structure and demonstrated measurement invariance across the HIV+ and HIV− participants. Analyses of 111 clinically stable participants (e.g., persons with no incident or remitting central nervous system disorders) who returned for a 14-month follow-up visit indicated that the SMRQoL had adequate test–retest stability. There was a significant interaction of age and HIV status on the SMRQoL, such that older HIV+ participants reported the lowest memory-related QoL. SMRQoL scores were associated with validated measures of mental and physical QoL, self-reported memory and cognitive symptoms, and performance-based memory and executive functions. Conclusions The SMRQoL shows evidence of reliability and validity as a measure of memory-related QoL that can be used to assess the impact of memory problems on everyday life, but future work is needed to demonstrate the measure’s incremental value in the context of diagnosis and treatment.

Development of a functional assessment of side-effects to therapy (FAST) questionnaire to assess dermatology-related quality of life in patients treated with EGFR inhibitors (EGFRI): The FAST-EGFRI

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 19532-19532 ◽  
Author(s):  
L. Wagner ◽  
S. E. Lai ◽  
M. Aneja ◽  
P. Lorusso ◽  
R. Perez-Soler ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Life ◽  
Symptom Burden ◽  
Physical Symptoms ◽  
Self Report ◽  
Antitumor Effects ◽  
Related Quality ◽  
The Impact ◽  
Skin Pain

19532 Background: Despite their beneficial antitumor effects, 75–87% patients who undergo EGFRI therapy develop dermatological toxicities (derm tox), including rash, paronychia, hair alterations, and pruritus. The purpose of this study was to develop a patient (pts) self-report questionnaire based on pts and expert (exp) input and to identify the most significant skin tox health-related quality of life (HRQL) factors. Methods: To generate the questionnaire, 20 pts with derm tox to EGFRIs and 12 expert clinicians (>50 treated pts) were asked interview questions and rated 62 items to assess the most bothersome aspects of derm tox and the impact on pts’ skin-specific HRQL. The questionnaire included items from the Skindex-29, a validated skin disease-specific HRQL questionnaire. Items were rated from 0 (not at all important) to 3 (extremely important) (range = 0–3) based on the items’ significance to patients’ HRQL. Both groups were also asked to circle 20 of the most concerning HRQL factors. Results: Eighteen pts and 11 exp completed the questionnaire. Symptoms reported frequently by both pts and exp that affected patients’ HRQL included painful (mean score 2.29 (pts), 2.70, (exp), burning (2.41 (pts), 2.70 (exp)), itchy (2.00 (pts), 2.20 (exp) skin, pain in fingers/toes (2.00 (pts), 2.40 (exp)) increased facial hair (1.93(pts), 1.70 (exp)). Both pts and exp also frequently reported that the patient’s skin condition makes them feel depressed (1.88 (pts), 2.60 (exp)) and makes work or hobbies difficult (2.00 (pts), 2.20 (exp)). The top three most concerning HRQL factors for pts were skin pain, burning and stinging, and irritation, while exp reported depression, skin pain, and derm tox affecting pts’ social life. Conclusions: These results document the trajectory of symptom burden and derm tox HRQL in EGFRI treated pts. These findings underscore that in addition to the psychosocial discomfort, physical symptoms impact HRQL. Further studies to validate the FAST-EGFRI, so that effects on HRQL of interventions against derm tox and differences between agents can be assessed are underway. No significant financial relationships to disclose.

Evaluation of an Instrument Assessing Influence of Gout on Health-Related Quality of Life

2008 ◽  
Vol 35 (12) ◽  
pp. 2406-2414 ◽  
Author(s):  
JAN D. HIRSCH ◽  
SUSAN J. LEE ◽  
ROBERT TERKELTAUB ◽  
DINESH KHANNA ◽  
JASVINDER SINGH ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Demographic Data ◽  
Reliability And Validity ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

ObjectiveTo evaluate the reliability and validity of an instrument assessing the influence of gout (acute and chronic) on health-related quality of life (HRQOL).MethodsFocus groups were used to examine the content of an existing Gout Assessment Questionnaire (GAQ1.0). GAQ2.0 was developed, consisting of a section describing the impact of gout on HRQOL [Gout Impact (GI)] and 4 sections describing subjects’ gout overall and demographic data. The GAQ2.0 and the Medical Outcomes Study Short Form-36 Version 2 (SF-36v2) were completed by gout patients in 3 US cities. GI scales were examined using clinical judgment, review of item statistics, Rasch analysis, and confirmatory factor analysis.ResultsSubjects (n = 308) were predominantly male (90.2%), Caucasian (75.9%), with a mean age 62.2 ± 11.8 years. Half the subjects (49.7%) reported ≥ 3 attacks in the past year. Two-week test-retest reliability for each scale was good (0.77 to 0.89) for all 5 GI scales. All scales achieved high sufficient (0.86 to 0.89) or excellent (0.93 to 0.97) ratings based on 10-item adjusted alpha coefficients. Correlations and tests among known groups indicated subjects with more severe gout had higher GI scores (i.e., greater gout impact). GI scores correlated more highly with patient-reported measures of gout severity than the SF-36v2 and several traditional measures of gout severity.ConclusionThe GAQ2.0 is an instrument for measuring the impact of gout on HRQOL. The GI section exhibited acceptable reliability and validity characteristics. Future studies should assess GI responsiveness, minimally important differences, and psychometric properties in other patient populations.

scholarly journals Content validation of a self-report daily diary in patients with sickle cell disease

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Michelle K. White ◽  
Cory Saucier ◽  
Miranda Bailey ◽  
Denise D’Alessio ◽  
April Foster ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Self Report ◽  
Content Validation ◽  
Cell Disease ◽  
Concept Elicitation ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and have been associated with increased morbidity and mortality. The Sickle Cell Pain Diary- Self Report (SCPD-S) was developed as a daily patient-reported outcome (PRO) measure primarily intended to capture the frequency and severity of SCD-related pain during and outside of a SCPC. The SCPD-S also examines the impact of the pain associated with an SCPC on other health-related quality of life concepts. The objective of this study was to investigate the content validity of the SCPD-S. Methods The content validation testing included 18 in-depth hybrid concept elicitation and cognitive debriefing interviews conducted with SCD patients in the US aged 12 years and older. Interviewers used a semi-structured interview guide and a think-aloud approach for the cognitive debriefing portion. All interviews were recorded, transcribed, coded and analyzed. Results Eighteen interviews across two rounds were conducted. Round 1 hybrid interviews (n = 12) resulted in the expansion of the SCPD-S from 13 to 19 items. Items on the impact of an SCPC on social and recreational activities, sleep, and emotional well-being were added. Five items were significantly revised, as were three response choice sets. Round 2 hybrid interviews (n = 6) confirmed the comprehensiveness of the revised diary, understandability of the wording, and appropriateness of the recall period and response sets. Saturation analyses specific to concept elicitation revealed that no additional interviews were needed. Conclusions This study provided evidence to support the content validity of the SCPD-S, a self-report daily diary. Data gathered during patient interviews indicated that the SCPD-S is a fit for purpose measure of SCD and SCPC-related pain frequency and severity and the impact of this pain on other health-related quality of life concepts including fatigue and emotional health. The numerous changes to the SCPD-S as a result of the study findings highlight the importance of the content validation process when developing a PRO measure.

Pediatric-onset multiple sclerosis is associated with reduced parental health–related quality of life and family functioning

2018 ◽  
Vol 25 (12) ◽  
pp. 1661-1672 ◽  
Author(s):  
Julia O’Mahony ◽  
Ruth Ann Marrie ◽  
Audrey Laporte ◽  
Amit Bar-Or ◽  
E Ann Yeh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Family Functioning ◽  
Disease Onset ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background: Diagnosis of multiple sclerosis (MS) during childhood has the potential to impact the affected child’s self-perception and the health-related quality of life (HRQoL) of the family. Objective: To evaluate the impact of chronic disease, in children ascertained as having MS and their families, when compared to those with monophasic acquired demyelinating syndrome (monoADS). Methods: In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the Pediatric Quality of Life Inventory (PedsQL™) Modules. Results: Participants (58 MS; 178 monoADS) provided cross-sectional HRQoL data a median (interquartile range (IQR)) of 4.1 (2.0–6.0) years after disease onset. The HRQoL of parents of children with MS and their family functioning was lower when compared to that of parents and families of children with monoADS (both p < 0.001); parents of children with MS reported greater emotional dysfunction, worry, worse communication, and lower family functioning irrespective of clinical disease activity. Self-reports of the MS and monoADS participants did not suggest a difference in overall HRQoL or fatigue after adjusting for age of the child at the time of assessment. Conclusion: While children with MS did not self-report lower HRQoL compared to children who experienced monoADS, the diagnosis of MS during childhood was negatively associated with parental HRQoL and family functioning.

Health related quality of life in adults with ADHD symptoms: A population survey using 15D and AAQoL

2016 ◽  
Vol 33 (S1) ◽  
pp. S172-S173
Author(s):  
L. Alaheino ◽  
S. Leppämäki ◽  
T. Partonen ◽  
M. Sainio
Keyword(s):  
Quality Of Life ◽  
Adult Adhd ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Difference ◽  
The Impact ◽  
Disease Specific

IntroductionHealth related quality of life (HRQoL) can be measured and compared, to give us an understanding of the impact different diseases have on health. The diagnostic tests for attention-deficit/hyperactive disorder (ADHD) in adulthood fail to catch the diversity of ways the condition affects one's life. Disease-specific quality-of-life scales try to reach beyond the typical symptoms of the condition, to find those specific difficulties a person subjectively grades as challenging.ObjectivesTo assess the levels of general and disease-specific HRQoL in adults with ADHD-like symptoms.AimsTo understand the impact ADHD-like symptoms have on adults’ HRQoL.MethodsA random, nationwide sample of 3000 Finnish speaking citizens (aged 18-44 years) was drawn from the national population register. A subsample of 171 people, 57 screener (Adult ADHD Self-Report Scale [ASRS]) positive cases and two age- and sex-matched controls for each case, participated in a telephone interview. General HRQoL was measured with 15D, and disease-specific HRQoL with Adult ADHD Quality-of-Life (AAQoL) scale.ResultsThe 15D score was 0.866 for the screener positives, 0.943 for the controls, and 0.945 for the Finnish population reference. The difference between the screener positives and controls was significant (P < 0.001). The AAQoL sum score was worse for the screener positives than controls (61.9 vs. 82.1, P < 0.001), and all the subscales were affected accordingly.ConclusionsAdults with ADHD-like symptoms have a lower quality of life, as measured both on the general and on the condition-specific quality of life scales.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Validity and Reliability of a Questionnaire for Measuring Child Oral-health-related Quality of Life

2002 ◽  
Vol 81 (7) ◽  
pp. 459-463 ◽  
Author(s):  
A. Jokovic ◽  
D. Locker ◽  
M. Stephens ◽  
D. Kenny ◽  
B. Tompson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Intraclass Correlation ◽  
Well Being ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Oral-health-related quality of life measures that exist are designed for adults. This study aimed to develop and evaluate the CPQ11-14, a self-report measure of the impact of oral and oro-facial conditions on 11- to 14-year-old children. An item pool was generated with the use of a literature review and interviews with health professionals, parents, and child patients. The 36 items rated the most frequent and bothersome by 83 children were selected for the CPQ11-14. Validity testing involved a new sample of 123 children. Test-retest reliability was assessed in a subgroup of these children (n = 65). Mean CPQ11-14 scores were highest for oro-facial (31.4), lower for orthodontic (24.3), and lowest for pedodontic (23.3) patients. There were significant associations between the CPQ11-14 score and global ratings of oral health (p < 0.05) and overall well-being (p < 0.01). The Cronbach's alpha and intraclass correlation coefficient for the CPQ11-14 were 0.91 and 0.90, respectively. These results suggest that the CPQ11-14 is valid and reliable.

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