Health-related Quality Of Life Module Research Articles

Pain and Health-Related Quality of Life in Autosomal Dominant Polycystic Kidney Disease: Results from a National Patient-Powered Registry

Rationale and ObjectiveADPKD impacts health-related quality of life (HRQoL) including pain, discomfort, fatigue, emotional distress, and impaired mobility. Stakeholders prioritized kidney cyst-related pain as an important core outcome domain in clinical trials, leading to development of disease-specific assessment tools. Study DesignThe ADPKD Registry is hosted online with multiple disease-specific patient reported outcomes modules to characterize the patient experience in the United States. Setting and ParticipantsThe ADPKD Registry allows consented participants access to a Core Questionnaire which includes demographics, comorbid conditions, current symptoms, and kidney function. Participants complete subsequent modules on a 3-month schedule, including two validated HRQoL tools, the ADPKD Pain and Discomfort Scale (ADPKD-PDS), the ADPKD Impact Scale (ADPKD-IS) and a Healthcare Access and Utilization module. ExposuresPatient-reported latest eGFR or creatinine used to calculate stage of chronic kidney disease. OutcomesHealth-related quality of life, measured using validated ADPKD-specific tools; access to PKD-specific healthcare. Analytical ApproachFor the two HRQoL tools, scores were calculated for physical, emotional, and fatigue domains, pain severity, and pain interference (based on the licensed user manuals). Associations to health care access were also assessed. ResultsBy July 2022, 1,086 individuals with ADPKD completed at least one of the HRQoL modules, 319 completed four over a year. Participants were an average age of 53, 71% women and 91% white, with all CKD stages represented. 2.5% reported being on dialysis and 23% had a kidney transplant. CKD Stage 4/5 participants reported the most dull kidney pain, while sharp kidney pain was evenly distributed across early CKD stages. Dull kidney pain had an impact on sleep regardless of CKD stage. There was a strong positive correlation between the ADPKD-PDS and ADPKD-IS. Patients with a neutral or positive HRQoL were less likely to have been denied access to imaging or other care. LimitationsCurrently all the information collected is patient-reported without health record validation of clinical variables. ConclusionsUse of the HRQoL tools in the ADPKD Registry provided a broad cross-sectional assessment in the U.S. and provided granular information on the burden of pain across the CKD spectrum in ADPKD. The ADPKD Registry allowed assessment of ADPKD impact in a community that experiences decline in health and kidney function over decades.

Does Segmental Mandibulectomy Involving Critical Functional Sites Affect Quality of Life?

Segmental mandibulectomy (SM) is a morbid procedure, often indicated in the treatment of oral cavity pathology; however, the effect on quality of life resulting from resection of specific mandibular subsites has not previously been investigated. This study's primary aim was to evaluate differences in Health-Related Quality of Life (HRQoL) among patients who underwent segmental mandibulectomy with condylectomy (SMc+) or not (SMc-), and secondarily among patients who underwent SM with symphyseal resection (SMs+) or not (SMs-). A single-centre cross-sectional study was performed, identifying adults who had undergone SM over a 5-year period. Patients who had disease recurrence, further major head and neck surgery, or any surgery 3months prior to participating were excluded. Demographic, disease and treatment data were obtained via chart review. Participants completed the European Organisation for Treatment of Cancer 'General' and 'Head and Neck Specific' HRQoL modules. Condylectomy and midline-crossing resection were the primary and secondary predictor variables, while the primary outcome was HRQoL. Study variables were cross tabulated against predictor and outcome variables to identify potential confounders. The association between condylectomy and symphyseal resection on HRQoL was modelled using linear regression and subsequently with identified confounding factors. Forty-five enrolled participants completed questionnaires, of which 20 had undergone condylectomy and 14 symphyseal resection. Participants were majority male (68.9%) and on average 60.2±18years old, having undergone surgery 3.8±1.8years prior to participation. Prior to adjustment, Condylectomy patients reported significantly worse 'Emotional Function' (mean±standard deviation) (47.7±25.5 vs 68.4±26.6, P=.02), 'Social Function' (46.3±33.6 vs 61.4±28.9, P=.04) and 'Mouth Opening' (61.1±36.7 vs 29.8±38.3, P=.04) compared to the SMC- group. SMs+patients reported significantly worse scores in 'Social Function' (43.9±30.1 vs 48.3±32,1, P=.03), 'Dry Saliva' (65.1±35.3 vs 38.5±33.9, P<.01) and 'Social Eating' (48.5±45.6 vs 30.8±36.4, P<.01) compared to the SMs-group. Following adjustment only 'emotional function' in the SMc comparison retained significance (P=.04). SM causes anatomical distortion resulting in functional deficit. While the condyle and symphysis are theoretically functionally important, our findings suggest that morbidity associated with their resection may be the result of associated surgical and adjuvant treatment burden.

The Impact of Health Behaviors on Health-Related Quality of Life in College Students

Abstract Objectives The objective was to explore the influence of health behaviors on health-related quality of life (HRQOL) among college undergraduate students. Methods A convenience sample of college students completed an online survey consisting of the Center for Disease Control's HRQOL modules, perceived stress scale, sleep questionnaire, and the National Cancer Institute Fruit and Vegetable (FV) Screener. Body mass index (BMI) was calculated using self-reported height and weight. Independent t-test were used to compare HRQOL between students who consumed above/below average fruit and vegetable intake. Two multiple regression analyses were used to determine health factors that predicted better HRQOL. Results Participants (N = 655) were 19.8 ± 1.5 years old, female (63%), and white (84%). The average FV intake was 2.2 servings per day. Students who consumed more than the average intake of FV, reported more days/month (d/m) feeling healthy and full of energy (11.9 ± 8.6 vs. 8.9 ± 7.9, P &amp;lt; 0.001), and reported less d/m of poor mental health (8.5 ± 8.1 vs. 11.1 ± 9.8, P &amp;lt; 0.001) compared to those who consumed less than the average. Two predictors explained 38.5% of variance in d/m when mental health was not good (r2 = 0.38, F (2,639) = 200.11, P &amp;lt; 0.001): perceived stress (β = 0.61, P &amp;lt; 0.001) and FV intake (β = −0.08, P &amp;lt; 0.05). Four predictors explained 30.0% of the variance in d/m feeling happy and full of energy (r2 = 0.29, F (4,549) = 58.6, P &amp;lt; 0.001): perceived stress (β = −0.46, P &amp;lt; 0.001), BMI (β = −0.11, P &amp;lt; 0.01), FV intake (β = 0.16, P &amp;lt; 0.001), and hours of sleep (β = 0.08, P &amp;lt; 0.05). Conclusions This data shows that students who consumed above average FV intake reported more days of feeling happy and full of energy and less days of poor mental health, and that modifiable behaviors (FV intake, stress, sleep) impact HRQOL of young adults. This research provides justification for college aimed wellness interventions to include both nutrition education and mental health resources to improve overall HRQOL. Funding Sources This project was supported by the USDA National Institute of Food and Agriculture, Hatch project number #ME0022104 through the Maine Agricultural &amp; Forest Experiment Station. NJ Agriculture Experiment Station.

Phase I–III development of the EORTC QLQ-ANL27, a health-related quality of life questionnaire for anal cancer

Background and purposeThere is currently no health-related quality of life (HRQoL) measure specific to anal cancer. Our objective was to develop an anal cancer HRQoL module to supplement the EORTC QLQ-C30 questionnaire using EORTC Quality of Life Group Guidelines. Materials and methodIn order to generate a list of HRQoL issues facing anal cancer patients treated with chemoradiotherapy (CRT), we systematically reviewed the literature and conducted semi-structured interviews with patients and health care professionals (HCPs). Our list was then operationalised into questions using the EORTC Item Library. The provisional question list was pilot tested alongside the EORTC QLQ-C30 with patients from 11 centres across 8 countries. ResultsFrom our literature review and interviews with 43 patients, we generated a list of 197 issues. The list was then refined to 134 issues and reviewed by 34 HCPs and 10 patients. This review resulted in the retention of 65 issues which were used in the draft questionnaire tested by 100 patients. Our analyses led to the modification and removal of questions resulting in a 27 item questionnaire, the EORTC QLQ-ANL27. ConclusionWe have developed a 27 item questionnaire to supplement the EORTC QLQ-C30, for use with patients treated for anal cancer. This has been pilot tested and is now available upon request for use in clinical trials as well as clinical practice in 8 languages (http://groups.eortc.be/qol/).

Quality of life in very elderly radiotherapy patients: a prospective pilot study using the EORTC QLQ-ELD14 module.

In very elderly cancer patients, health-related quality of life (HRQOL) is a particularly important issue but has rarely been studied due to a lack of specific instruments and of reference data. We performed a prospective analysis of HRQOL in patients ≥80 years undergoing radiotherapy with the newly validated elderly-specific HRQOL module EORTC QLQ-ELD14. We prospectively assessed HRQOL in n = 50 radiotherapy patients ≥80 years (32% lung, 20% gastrointestinal, 8% each of breast, head and neck, gynecologic cancer) at the start (t1), end (t2), and 6 months after (t3) radiotherapy, using EORTC QLQ-C30 and EORTC QLQ-ELD14. Overall survival was determined in the whole cohort and subgroups. Median overall survival from the start of radiotherapy was 15 months; 1-year and 2-year overall survival rates were 57.1 and 31.0%, respectively. Eastern Cooperative Oncology Group (ECOG) performance status <2, Charlson comorbidity index ≤6, curative treatment intention, local tumor stage Union Internationale Contre le Cancer (UICC I, II), and total dose >45 Gy were associated with prolonged survival. No significant changes in any HRQOL domain were observed during the course of treatment (t1 to t2). Six months after radiotherapy (t3), a significant and clinically relevant deterioration of HRQOL was seen in EORTC QLQ-C30 for physical function and role function and in EORTC QLQ-ELD14 for future worries, burden of illness, and family support. In radiotherapy patients ≥80 years, HRQOL was maintained until the end of radiotherapy but deteriorated in general and elderly-specific areas thereafter, suggesting a need to develop specific supportive interventions for this age group.

User-centered design and usability testing of an innovative health-related quality of life module.

Various computerized health risk appraisals (HRAs) are available, but few of them assess health-related quality of life (HRQoL) in a goal-directed framework. This study describes the user-centered development and usability testing of an innovative HRQoL module that extends a validated HRA tool in primary care settings. Systematic user-centered design, usability testing, and qualitative methods were used to develop the HRQoL module in primary care practices. Twenty two patients and 5 clinicians participated in two rounds of interactive technology think-out-loud sessions (TOLs) and semi-structured interviews (SSIs) to iteratively develop a four-step, computerized process that collects information on patient goals for meaningful life activities and current level of disability and presents a personalized and prioritized list of preventive recommendations linked to online resources. Analysis of TOLs and SSIs generated 5 categories and 11 sub-categories related to facilitators and barriers to usability and human-technology interaction. The categories included: Understanding the Purpose, Usability, Perceived Value, Literacy, and Participant Motivation. Some categories were inter-connected. The technology was continually and iteratively improved between sessions until saturation of positive feedback was achieved in 4 categories (addressing motivation will require more research). Usability of all screen units of the module was improved substantially. Clinician feedback emphasized the importance of the module's ability to translate the patient-centered HRQoL Report into actionable items for clinicians to facilitate shared decision-making. Complete integration of the HRQoL module into the existing HRA will require further development and testing. Systematic application of user-centered design and human factors principles in technology development and testing may significantly improve the usability and clinical value of health information systems. This more sophisticated approach helped us translate complex clinical concepts, goal-setting steps, and decision-support processes into an accepted and value-added technology.

The reliability of the disabled children's quality-of-life questionnaire in Swedish children with diabetes

To determine the reliability of the disabled children's quality-of-life measure (DISABKIDS) chronic generic questionnaire and diabetes module in children. The questionnaire is being evaluated for repeated routine health-related quality-of-life (HrQoL) assessment and in association with the Swedish national paediatric diabetes registry (Swediabkids), which is a tool for regular clinical use. Children and parents completed the questionnaire during a routine visit to the diabetes clinic. In total, 120 families completed the test and retest. Split-half reliability correlation and intraclass correlation (ICC) coefficients were calculated. Bland & Altman plots were calculated on the generic HRQoL domain. Both child and parent versions showed good internal consistency. Test-retest ICC coefficients for the generic HrQoL module were 0.913 for the children and 0.820 for the parent version. All generic domains independently showed good reliability. The diabetes module had a score of 0.855 for children and 0.823 for parents. Split-half correlation for generic and diabetes modules was 0.930 and 0.848 for children, 0.953 and 0.903 for parents. Bland and Altman plots showed substantial agreement between the two administrations for both children and parents. The DISABKIDS questionnaire is a reliable instrument for the repeated measurements of HrQoL in children with diabetes.

The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents

BackgroundThe 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.MethodsFocus 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.ResultsThe 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.ConclusionThe 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.

A cardiac-specific health-related quality of life module for young adults with congenital heart disease: Development and validation

This study represents the development and validation of a cardiac-specific module of the generic health-related quality of life (HRQoL) instrument, the TAAQOL (TNO/AZL Adult Quality Of Life), for young adults with congenital heart disease (CHD). Items were selected based on literature, an explorative previous study in CHD patients, interviews with patients, and the advice of experts. The newly developed Congenital Heart Disease-TNO/AZL Adult Quality of Life (CHD-TAAQOL) was tested in 156 patients with mild or complex CHD and consisted of three hypothesised subject scales: 'Symptoms' (9 items), 'Impact Cardiac Surveillance' (7 items), and 'Worries' (10 items). Cronbach's alpha for the three scales were 0.77, 0.78, and 0.82, respectively. Scale structure was confirmed by Principal Component Analysis, corrected item-scale and interscale correlations. Overall, 55% of reported health status problems were associated with negative emotions, which is an argument for assessing HRQoL as a concept distinct from health status. Convergent validity with validated generic instruments (TAAQOL and Short Form-36, SF-36) showed satisfactory coefficients. Discriminant validity was proven by significantly higher scores for mild CHD patients compared with those with complex CHD. In conclusion, the CHD-TAAQOL module together with the generic TAAQOL can be used to assess group differences for cardiac-specific HRQoL in young adults with CHD. Testing psychometric properties of the CHD-TAAQOL shows satisfactory results. However, to detect changes in HRQoL over time, further research is needed.

Health-related quality of life among older adults with arthritis

BackgroundHealth-related quality of life (HRQOL) is a key outcome in arthritis, but few population-based studies have examined the relationship of specific arthritic conditions, such as osteoarthritis (OA) and rheumatoid arthritis (RA) with HRQOL.MethodsOlder adults in Pennsylvania completed a mail version of the Centers for Disease Control and Prevention (CDC) HRQOL modules. Medicare data were used to identify subjects with OA, RA, and no arthritis diagnosis. We compared HRQOL responses among these groups, and we also examined relationships of demographic characteristics to HRQOL among subjects with arthritis.ResultsIn analyses controlling for demographic characteristics and comorbidity, subjects with OA and RA had poorer scores than those without arthritis on all HRQOL items, including general health, physical health, mental health, activity limitation, pain, sleep, and feeling healthy and full of energy. HRQOL scores were also lower for those with RA compared to OA. Among individuals with arthritis, all subject characteristics (including age, race, sex, nursing home residence, marital status, income, and comorbid illnesses) were significantly related to at least one HRQOL item. Older age, nursing home residence, and greater comorbidity were the most consistently associated with poorer HRQOL.ConclusionsResults of this study show that both OA and RA have a significant impact on multiple dimensions of HRQOL among older adults. Results also suggest the CDC HRQOL items are suitable for use among older adults and in mail surveys. Due to the rising number of older adults in many countries, the public health burden of arthritis is expected to increase dramatically. Efforts are needed to enhance access to medical care and disseminate self-management interventions for arthritis.

Relationship of health-related quality of life to health care utilization and mortality among older adults.

This investigation examined the ability of a four-item Health-Related Quality of Life (HRQOL) scale to predict short-term (30-day) and long-term (1-year) physician visits, hospitalization, and mortality among older adults. Subjects included 84065 individuals aged 65 and older who completed a mail version of the Centers for Diseases Control's Behavioral Risk Factor Surveillance System (BRFSS) Core HRQOL Module. HRQOL dimensions represented by the module include global self-rated general health, recent physical health, recent mental health, and recent activity limitation. In analysis of covariance models controlling for demographic factors and comorbidity, the number of physician visits within 30 days and 1 year differed significantly across categories of each HRQOL item. In Cox regression models controlling for the same covariates, all four HRQOL questions were significant predictors of 30-day and 1-year hospitalization and mortality. These results signify that all four dimensions of HRQOL represented by the BRFSS Core HRQOL Module are important predictors of both short-term and long-term adverse health events among older adults. This brief scale may be particularly useful for assessing the health of older adults in clinical settings and large-scale epidemiological studies.

Performance of health-related quality-of-life instruments in a spinal cord injured population

Objective: General health-related quality-of-life (HRQoL) surveys have not been well tested in populations with spinal cord injury (SCI). This study evaluated the performance of 5 such instruments. Design: A cross-sectional survey with instruments administered in random order during computer-assisted interviews. Setting: A midwestern US veteran SCI program. Subjects: One hundred eighty-three veterans with SCI ranging in age from 21 to 81yrs (mean = 50.5). Measures: The Behavioral Risk Factor Surveillance System (BRFSS) HRQoL modules, the Quality of Well-Being scale (QWB), the Medical Outcomes Study Short-Form 36 and Short-Form 12 (SF-36, SF-12), and instrumental activities of daily living (IADL). Results: Construct validity was supported by scores from the QWB, IADL, and physical health measures of the BRFSS and SF-36 showing greater impairment for quadriplegia than paraplegia. Similar constructs on the SF-36 and BRFSS were more strongly correlated than between the IADL and QWB; eg, correlation between the SF-36 Vitality scale and the BRFSS “Days full of energy” question was r = .789 ( p < .01), whereas correlation between the IADL and QWB was r = −.454 ( p < .01). Longer surveys (SF-36, QWB) were rated lower in subject acceptability. Conclusions: These instruments have potential for research use among patients with SCI. More studies are needed to explore the best use of instruments with apparently different domains.