"Pathways": A hope-enhancing intervention for patients undergoing treatment for advanced lung cancer.

OBJECTIVE: Observational data suggest hope is associated with the quality of life and survival of people with cancer. This trial examined the feasibility, acceptability, and preliminary outcomes of "Pathways," a hope intervention for people in treatment for advanced lung cancer. METHODS: Between 2020 and 2022, we conducted a single-arm trial of Pathways among participants who were 3-12 weeks into systemic treatment. Pathways consisted of two individual sessions delivered during infusions and three phone calls in which participants discussed their values, goals, and goal strategies with a nurse or occupational therapist. Participants completed standardized measures of hope and goal interference pre- and post-intervention. Feasibility was defined as ≥60% of eligible patients enrolling, ≥70% of participants completing three or more sessions, ≥70% of participants completing post-assessments, and mean acceptability ratings ≥7 out of 10 on intervention relevance, helpfulness, and convenience. Linear regression fixed effects models with covariates modeled pre-post changes in complete case analysis and multiple imputation models. RESULTS: Fifty two participants enrolled: female (59.6%), non-Hispanic White (84.6%), rural (75.0%), and with low educational attainment (51.9% high school degree or less). Except for enrollment (54%), feasibility and acceptability markers were surpassed (77% adherence, 77% retention, acceptability ratings ≥8/10). There was moderate improvement in hope and goal interference from pre-to post-intervention (d = 0.51, p < 0.05 for hope; d = -0.70, p < 0.005 for goal interference). CONCLUSIONS: Strong feasibility, acceptability, and patient-reported outcome data suggest Pathways is a promising intervention to increase hope and reduce cancer-related goal interference during advanced lung cancer treatment.

The differential impact of COVID-19 across health service psychology students of color: An embedded mixed-methods study.

OBJECTIVES: Communities of color in the United States systematically experience inequities in physical and mental health care compared to individuals who identify as non-Hispanic White. The coronavirus disease 2019 (COVID-19) pandemic exacerbated these structural drivers of inequity to disproportionate and devastating effects for persons of color. In addition to managing the direct effects of COVID-19 risk, persons of color were also navigating increased racial prejudice and discrimination. For mental health professionals and trainees of color, the effects of COVID-19 racial health disparities and the increase in acts of racism may have been compounded by their work responsibilities. The current study used an embedded mixed-methods approach to examine the differential impact of COVID-19 on health service psychology (HSP) students of color as compared to their non-Hispanic White peers. METHOD: Using quantitative and qualitative data from the Epidemic-Pandemic Impacts Inventory, measures of perceived support and of discrimination, and open-ended questions about students' experiences with racism and microaggressions, we examined the extent to which different racial/ethnic HSP student groups experienced COVID-19-related discrimination, the impacts of COVID-19 felt by students of color, and how these experiences differed from those of their non-Hispanic White peers. RESULTS: HSP students of color endorsed greater impacts of the pandemic on both self and others in the home, perceived themselves as less supported by others, and reported more experiences of racial discrimination than non-Hispanic White HSP students. CONCLUSION: Throughout the graduate experience, HSP students of color and their experiences of discrimination need to be addressed. We provided recommendations to HSP training program directors and students both during and after the COVID-19 pandemic.

Characterizing changes in mental health-related outcomes for health service psychology graduate students during the first year of the COVID-19 pandemic.

OBJECTIVES: Health service psychology (HSP) graduate students experienced adverse mental health outcomes during COVID-19. However, little is known about how mental health outcomes changed in this population after the onset of COVID-19. METHODS: N = 496 HSP graduate students reported onset or worsening of mental health outcomes, inability to access mental health care, worry about COVID-19, and stress at two different timepoints during the first year of the COVID-19 outbreak (timepoint 1: May 1 to June 25, 2020; timepoint 2: September 2 to October 17, 2020). This study tested whether mental health outcomes improved, worsened, or stayed stable during this timeframe. The study also examined whether rising COVID-19 case rates in the state where a participant lived moderated changes in mental health outcomes. RESULTS: Overall, HSP graduate students endorsed adverse mental health outcomes at a higher rate during the first survey relative to the second survey. Even still, 62.68% of students reported worsened mental health symptoms, 49.84% reported worsened sleep, and 23.92% reported increased alcohol and substance use in the 2 months leading up to the second survey. CONCLUSION: HSP programs should monitor graduate students' evolving mental health, provide wellness resources, and adopt flexible approaches to support graduate students navigating training during periods of immense disruption.

Developing pathways, a hope-enhancing intervention for metastatic lung cancer patients receiving cancer treatment.

OBJECTIVE: Between 40% and 65% of lung cancer patients report concern about maintaining valued activities and roles, yet few interventions address this concern. Hope, a patient's perceived ability to generate goals and identify ways to pursue them, may be a promising intervention target to support function among lung cancer patients. The goal of this study was to assess metastatic non-small cell lung cancer (mNSCLC) patient interest and preferences for a hope-enhancing intervention. METHODS: We conducted a sequential mixed-methods (survey followed by semi-structured interviews) study with patients with mNSCLC. Surveys assessed patient interest in, perceived helpfulness of, and preferences for a hope intervention. A subset of 12 patients (and caregivers, when present) completed semi-structured interviews to elicit feedback on proposed intervention content and procedures. RESULTS: Survey data from 60 patients (40% male; Mean age = 62.5; SD = 9.3) suggested high perceived importance of pursuing personal goals during cancer treatment, moderate perceived helpfulness in discussing personal goals, and preference for a nurse-led intervention. Based on these data, a 5-session, nurse-led intervention protocol was drafted and reviewed with 12 patients. Interviewed patients and caregivers agreed working towards goals was beneficial, liked the intervention concept, and thought prompts and rating scales on handouts would facilitate discussion. The majority preferred nurse delivery during infusions. CONCLUSIONS: A nurse-led hope-enhancing intervention delivered primarily during infusions may be acceptable to mNSCLC patients. Future work should test feasibility and identify ways to incorporate caregivers and oncology providers into hope interventions.

TBCRC 018: phase II study of iniparib in combination with irinotecan to treat progressive triple negative breast cancer brain metastases.

Nearly half of patients with advanced triple negative breast cancer (TNBC) develop brain metastases (BM) and most will also have uncontrolled extracranial disease. This study evaluated the safety and efficacy of iniparib, a small molecule anti-cancer agent that alters reactive oxygen species tumor metabolism and penetrates the blood brain barrier, with the topoisomerase I inhibitor irinotecan in patients with TNBC-BM. Eligible patients had TNBC with new or progressive BM and received irinotecan and iniparib every 3 weeks. Time to progression (TTP) was the primary end point; secondary endpoints were response rate (RR), clinical benefit rate (CBR), overall survival (OS), toxicity, and health-related quality of life. Correlative endpoints included molecular subtyping and gene expression studies on pre-treatment archival tissues, and determination of germline BRCA1/2 status. Thirty-seven patients began treatment; 34 were evaluable for efficacy. Five of 24 patients were known to carry a BRCA germline mutation (4 BRCA1, 1 BRCA2). Median TTP was 2.14 months and median OS was 7.8 months. Intracranial RR was 12 %, while intracranial CBR was 27 %. Treatment was well-tolerated; the most common grade 3/4 adverse events were neutropenia and fatigue. Grade 3/4 diarrhea was rare (3 %). Intrinsic subtyping revealed 19 of 21 tumors (79 %) were basal-like, and intracranial response was associated with high expression of proliferation-related genes. This study suggests a modest benefit of irinotecan plus iniparib in progressive TNBC-BM. More importantly, this trial design is feasible and lays the foundation for additional studies for this treatment-refractory disease.

Development and validation of the positive affect and well-being scale for the neurology quality of life (Neuro-QOL) measurement system.

PURPOSE: To develop and validate an item-response theory-based patient-reported outcomes assessment tool of positive affect and well-being (PAW). This is part of a larger NINDS-funded study to develop a health-related quality of life measurement system across major neurological disorders, called Neuro-QOL. METHODS: Informed by a literature review and qualitative input from clinicians and patients, item pools were created to assess PAW concepts. Items were administered to a general population sample (N = 513) and a group of individuals with a variety of neurologic conditions (N = 581) for calibration and validation purposes, respectively. RESULTS: A 23-item calibrated bank and a 9-item short form of PAW was developed, reflecting components of positive affect, life satisfaction, or an overall sense of purpose and meaning. The Neuro-QOL PAW measure demonstrated sufficient unidimensionality and displayed good internal consistency, test-retest reliability, model fit, convergent and discriminant validity, and responsiveness. CONCLUSION: The Neuro-QOL PAW measure was designed to aid clinicians and researchers to better evaluate and understand the potential role of positive health processes for individuals with chronic neurological conditions. Further psychometric testing within and between neurological conditions, as well as testing in non-neurologic chronic diseases, will help evaluate the generalizability of this new tool.

Racial/ethnic differences in spiritual well-being among cancer survivors.

This study examined racial/ethnic differences in spiritual well-being (SWB) among survivors of cancer. We hypothesized higher levels of Peace and Faith, but not Meaning, among Black and Hispanic survivors compared to White survivors, differences that would be reduced but remain significant after controlling for sociodemographic and medical factors. Hypotheses were tested with data from the American Cancer Society's Study of Cancer Survivors-II. The FACIT-Sp subscale scores, Meaning, Peace, and Faith assessed SWB, and the SF-36 Physical Component Summary measured functional status. In general, bivariate models supported our initial hypotheses. After adjustment for sociodemographic and medical factors, however, Blacks had higher scores on both Meaning and Peace compared to Hispanics and Whites, and Hispanics' scores on Peace were higher than Whites' scores. In contrast, sociodemographic and medical factors had weak associations with Faith scores. The pattern with Faith in bivariate models persisted in the fully adjusted models. Racial/ethnic differences in Meaning and in Peace, important dimensions of SWB, were even stronger after controlling for sociodemographic and medical factors. However, racial/ethnic differences in Faith appeared to remain stable. Further research is needed to determine if racial/ethnic differences in SWB are related to variations in quality of life in survivors of cancer.

Neighborhood disadvantage, household chaos, and personal stressors: exploring early-life contextual factors and current mental health symptoms in college students.

OBJECTIVE: Using Bronfenbrenner's socio-ecological model as a frame, we explored the impact of neighborhood disadvantage, household chaos, and personal stressors on current mental health symptoms in college students. PARTICIPANTS: 144 students at a large, public university in the southern U.S. METHODS: Participants completed measures of demographics, family-of-origin household chaos, stressors, anxiety, and depression, and provided their childhood home ZIP code. Using U.S. Census Data, four structural indicators of neighborhood disadvantage were extracted and appended to each participant's ZIP code. RESULTS: Hierarchical regression revealed that all three variables predicted anxiety symptoms. However, only household chaos and personal stressors predicted current depressive symptoms. Unexpectedly, greater neighborhood disadvantage predicted lower levels of current anxiety. Mediation analyses demonstrated that personal stressors partially mediated the relationships between household chaos and mental health symptoms. CONCLUSIONS: College administration and counseling centers may wish to consider pre-college factors that influence college students' current anxious and depressive symptoms.

Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing.

PURPOSE: Neuro-QOL provides a clinically relevant and psychometrically robust health-related quality of life (HRQL) assessment tool for both adults and children with common neurological disorders. We now report the psychometric results for the adult tools. METHODS: An extensive research, survey and consensus process was used to produce a list of 5 priority adult neurological conditions (stroke, multiple sclerosis, Parkinson's disease, epilepsy and ALS). We identified relevant health related quality of life (HRQL) domains through multiple methods and data sources including a comprehensive review of the literature and literature search, expert interviews and surveys and patient and caregiver focus groups. The final domain framework consisted of 17 domains of Physical, Mental and Social health. There were five phases of item development: (1) identification of 3,482 extant items, (2) item classification and selection, (3) item review and revision, (4) cognitive interviews with 63 patients to assess their understanding of individual items and (5) field testing of 432 representative items. PARTICIPANTS AND PROCEDURES: Participants were drawn from the US general population and clinical settings, and included both English and Spanish speaking subjects (N = 3,246). Confirmatory factor analysis (CFA) was used to evaluate the dimensionality of unidimensional domains. Where the domain structure was previously unknown, the dataset was split and first analyzed with exploratory factor analysis and then CFA. Samejima's graded response model (GRM) was used to calculate IRT parameters. We further evaluated differential item functioning (DIF) on gender, education and age. RESULTS: Thirteen unidimensional calibrated item banks consisting of 297 items were developed. All of the tested item banks had high reliability and few or no locally dependent items. The range of item slopes and thresholds with good information are reported for each of the item banks. The banks can support CAT and the development of short forms. CONCLUSION: The Neuro-QOL measurement system provides item banks and short forms that enable PRO measurement in neurological research, minimizes patient burden and can be used to create multiple instrument types minimizing standard error. The 17 adult measures include 13 calibrated item banks, 3 item pools available for calibration work by others, and 1 stand-alone scale (index). The Neuro-QOL instruments provide a "common metric" of representative concepts for use across patient groups in different studies.

Guidelines for psychological practice for people with low-income and economic marginalization: Executive summary.

This is a summary of the guidelines for working with low-income and economically marginalized (LIEM) people developed by the American Psychological Association (APA) task force and approved by the APA Council of Representatives. The task force, consisting of psychologists from a range of psychological specialties and both practice and educational settings, created guidelines in four main categories: Education and Training, Health Disparities, Treatment Considerations, and Career Concerns and Unemployment. Each category includes specific guidelines and recommended interventions. Further, the task force identified two major assumptions that cut across all of the recommendations: (1) The intersection of economic status and other identities is critical to psychological and other aspects of health, and (2) biases and stigma exacerbate the negative experiences of living with LIEM, and must be acknowledged and confronted by psychologists and trainees. Many of the guidelines and corollary interventions reinforce the need for psychologists and trainees to engage in activities that increase their own self-awareness and knowledge of issues and concerns that are exacerbated by economic marginalization, as well as challenge their own implicit and explicit biases related to social class and poverty. The impact of economic marginalization on education, health, and career attainment are addressed, and adaptations to psychological interventions are recommended. The task force concludes with a call to engage psychologists in action that seeks and promotes economic justice. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

The neurology quality-of-life measurement initiative.

OBJECTIVE: To describe the development and calibration of the banks and scales of the Quality of Life in Neurological Disorders (Neuro-QOL) project, commissioned by the National Institute of Neurological Disorders and Stroke to develop a bilingual (English/Spanish), clinically relevant, and psychometrically robust health-related quality-of-life (HRQOL) assessment tool. DESIGN: Classic and modern test construction methods were used, including input from essential stakeholder groups. SETTING: An online patient panel testing service and 11 academic medical centers and clinics from across the United States and Puerto Rico that treat major neurologic disorders. PARTICIPANTS: Adult and pediatric patients representing different neurologic disorders specified in this study, proxy respondents for select conditions (stroke, pediatric conditions), and English- and Spanish-speaking participants from the general population. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Multiple generic and condition-specific measures used to provide construct validity evidence for the new Neuro-QOL tool. RESULTS: Neuro-QOL has developed 14 generic item banks and 8 targeted scales to assess HRQOL in 5 adult (stroke, multiple sclerosis, Parkinson's disease, epilepsy, amyotrophic lateral sclerosis) and 2 pediatric conditions (epilepsy, muscular dystrophies). CONCLUSIONS: The Neuro-QOL system will continue to evolve, with validation efforts in clinical populations and new bank development in health domains not presently included. The potential for Neuro-QOL measures in rehabilitation research and clinical settings is discussed.

An examination of the 3-factor model and structural invariance across racial/ethnic groups for the FACIT-Sp: a report from the American Cancer Society's Study of Cancer Survivors-II (SCS-II).

OBJECTIVES: Recent confirmatory factor analysis (CFA) of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) Scale in a sample of predominantly white women demonstrated that three factors, Meaning, Peace, and Faith, represented a psychometric improvement over the original 2-factor model. The present study tested these findings in a more diverse sample, assessed the stability of the model across racial/ethnic groups, and tested the contribution of a new item. METHODS: In a study by the American Cancer Society, 8805 cancer survivors provided responses on the FACIT-Sp, which we tested using CFA. RESULTS: A 3-factor model provided a better fit to the data than the 2-factor model in the sample as a whole and in the racial/ethnic subgroups (Deltachi(2), p<0.001, for all comparisons), but was not invariant across the groups. The model with equal parameters for racial/ethnic groups was a poorer fit to the data than a model that allowed these parameters to vary (Deltachi(2)(81)=2440.54, p<0.001), suggesting that items and their associated constructs might be understood differently across racial/ethnic groups. The new item improved the model fit and loaded on the Faith factor. CONCLUSIONS: The 3-factor model is likely to provide more specific information for studies in the field. In the construction of scales for use with diverse samples, researchers need to pay greater attention to racial/ethnic differences in interpretation of items.

Development and initial validation of the Perceived Scarcity Scale.

Though socio-economic status (SES) partially explains the experience of stress and health outcomes, most research to date has relied on a small number of traditional indicators that fail to capture the full domain of socioeconomic factors. The recent reconceptualization of perceived scarcity is proposed as a subjective indicator of SES when attempting to predict both stress and health outcomes. Although a conceptualization of perceived scarcity has been advanced, a psychometrically sound scale is needed to assess the utility and scientific import of this concept. No such scale exists. Therefore, the current paper describes the development, psychometric properties, and initial validation of the Perceived Scarcity Scale (PScS). Four studies using traditional scale development processes were employed to develop (Studies 1 and 2) and provide an initial validation (Studies 3 and 4) for the PScS. Results support the existing model of perceived scarcity and indicate that the measure is valid. Moreover, the scale predicted concurrent perceived stress, as well as longitudinal ratings of perceived stress, global health, quality of life, and symptoms of depression and anxiety. The development of the new scale provides clinicians and researchers with a brief, validated measure that can assess the level of perceived scarcity individuals currently experience.

Measurement accuracy in assessing patient's quality of life: to weight or not to weight domains of quality of life.

PURPOSE: Health-related quality of life (HRQOL) measures typically do not incorporate patients' preferences for domains such as physical, emotional, functional and social/family well-being, which may compromise precision. METHOD: A forced-choice domain-preference measure was developed to assess the importance of HRQOL domains. About 194 cancer patients completed the domain-preference measure, along with measures of HRQOL, coping, adjustment, and life satisfaction. RESULTS: Patients ranked emotional well-being as most important and the loss of social-family well-being as the most difficult to do without. A weighting algorithm revealed no advantage to incorporating individuals' domain preferences in HRQOL assessment; however, preliminary evidence suggested that HRQOL measurement may be more accurate in predicting outcomes for individuals with no distinct domain preferences than those with distinct preference profiles. CONCLUSION: This study provides preliminary evidence for the validity of current measures of HRQOL, which may inherently take into account patients' domain preferences.

Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI).

PURPOSE: Most measures of stigma are illness specific and do not allow for comparisons across conditions. As part of a study of health-related quality of life for people with neurological disorders, our team developed an instrument to assess the stigma for people with chronic illnesses. METHODS: We based item content on literature review, responses from focus groups, and cognitive interviews. We then administered the items to people with neurological disorders for psychometric testing. RESULTS: Five hundred eleven participants completed items of the stigma scale. Exploratory factor analysis produced two factors that were highly correlated (r = 0.81). Confirmatory factor analysis produced high standardized loadings on an overall stigma factor (0.68-0.94), with poorer loadings on the two sub-domains (-0.12 to 0.53). These results demonstrated a sufficiently unidimensional scale that corresponded with the bifactor model. Item response theory modeling suggested good model fit, and differential item functioning analyses indicated that the 24-item scale showed potential for measurement equivalence across conditions. CONCLUSIONS: Our efforts produced a stigma scale that had promising psychometric properties. Further study can provide additional information about the SSCI and its benefit in measuring the impact of stigma across conditions.

A 3-factor model for the FACIT-Sp.

OBJECTIVE: The 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp) is a popular measure of the religious/spiritual (R/S) components of quality of life (QoL) in patients with cancer. The original factor analyses of the FACIT-Sp supported two factors: Meaning/Peace and Faith. Because Meaning suggests a cognitive aspect of R/S and Peace an affective component, we hypothesized a 3-factor solution: Meaning, Peace, and Faith. METHODS: Participants were 240 long-term female survivors of cancer who completed the FACIT-Sp, the SF-12, and the BSI 18. We used confirmatory factor analysis to compare the 2- and 3-factor models of the FACIT-Sp and subsequently assessed associations between the resulting solutions and QoL domains. RESULTS: Survivors averaged 44 years of age and 10 years post-diagnosis. A 3-factor solution of the FACIT-Sp significantly improved the fit of the model to the data over the original 2-factor structure (Delta chi(2)=72.36, df=2, p<0.001). Further adjustments to the 3-factor model resulted in a final solution with even better goodness-of-fit indices (chi(2)=59.11, df=1, p=0.13, CFI=1.00, SMRM=0.05).The original Meaning/Peace factor controlling for Faith was associated with mental (r=0.63, p<0.000) and physical (r=0.22, p<0.01) health on the SF-12, and the original Faith factor controlling for Meaning/Peace was negatively associated with mental health (r=-0.15, p<0.05). The 3-factor model was more informative. Specifically, using partial correlations, the Peace factor was only related to mental health (r=0.53, p<0.001); Meaning was related to both physical (r=0.18, p<0.01) and mental (r=0.17, p<0.01) health; and Faith was negatively associated with mental health (r=-0.17, p<0.05). CONCLUSION: The results of this study support a 3-factor solution of the FACIT-Sp. The new solution not only represents a psychometric improvement over the original, but also enables a more detailed examination of the contribution of different dimensions of R/S to QoL.

Use of a single-item screening tool to detect clinically significant fatigue, pain, distress, and anorexia in ambulatory cancer practice.

Fatigue, pain, distress, and anorexia are four commonly encountered symptoms in cancer. To evaluate the usefulness of a single-item screening for these symptoms, 597 ambulatory outpatients with solid tumors were administered a self-report screening instrument within the first 12 weeks of chemotherapy. Patients rated the severity of each symptom on a 0-10 scale, at its worst over the past three days, with higher ratings associated with higher symptom levels. From this sample, 148 patients also completed a more comprehensive assessment of these symptoms. Two criteria were used to determine optimal cut-off scores on the screening items: 1) the sensitivity and specificity of each screening item to predict clinical cases using receiver-operating characteristics analysis and 2) the proportion of patients at each screening score who reported that some relief of the target symptom would significantly improve their life. Optimal cut-off scores ranged from 4 to 6 depending on the target symptom (area under the curve range=0.68-0.88). Use of single-item screening instruments for fatigue, pain, distress, and anorexia may assist routine clinical assessment in ambulatory oncology practice. In turn, such assessments may improve identification of those at risk of morbidity and decreased quality of life due to excess symptom burden.

Self-rated health of primary care house officers and its relationship to psychological and spiritual well-being.

BACKGROUND: The stress associated with residency training may place house officers at risk for poorer health. We sought to determine the level of self-reported health among resident physicians and to ascertain factors that are associated with their reported health. METHODS: A questionnaire was administered to house officers in 4 residency programs at a large Midwestern medical center. Self-rated health was determined by using a health rating scale (ranging from 0 = death to 100 = perfect health) and a Likert scale (ranging from "poor" health to "excellent" health). Independent variables included demographics, residency program type, post-graduate year level, current rotation, depressive symptoms, religious affiliation, religiosity, religious coping, and spirituality. RESULTS: We collected data from 227 subjects (92% response rate). The overall mean (SD) health rating score was 87 (10; range, 40-100), with only 4 (2%) subjects reporting a score of 100; on the Likert scale, only 88 (39%) reported excellent health. Lower health rating scores were significantly associated (P < 0.05) with internal medicine residency program, post-graduate year level, depressive symptoms, and poorer spiritual well-being. In multivariable analyses, lower health rating scores were associated with internal medicine residency program, depressive symptoms, and poorer spiritual well-being. CONCLUSION: Residents' self-rated health was poorer than might be expected in a cohort of relatively young physicians and was related to program type, depressive symptoms, and spiritual well-being. Future studies should examine whether treating depressive symptoms and attending to spiritual needs can improve the overall health and well-being of primary care house officers.

Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions.

Measurement of health-related quality of life (HRQL) is of particular importance in neurology clinical trials, where differences in clinical measurements or laboratory data may not translate into significant benefit to the patients. A fundamental consideration in the development and use of an HRQL instrument is whether the instrument's conceptual framework accurately reflects the HRQL experience of the population of interest. This study details the findings from formative research that focused on the identification of content area for an HRQL measurement system in neurology. Specifically, 11 focus groups were conducted with caregivers and patients diagnosed with 7 neurological conditions that represented a range of symptomatology and ages. Through an analytic process using techniques derived from grounded theory, several themes emerged that describe the complexity of HRQL issues and the impact of neurological disorders on multiple areas of life functioning and experience. Findings suggest that although HRQL is comparable across neurological disorders, the contribution of specific domains to overall HRQL may differ among disorders.