Carol Estwing Ferrans

Quality of life index: development and psychometric properties.

The purpose of the study on which this article is based was to assess the validity and reliability of an instrument designed to measure quality of life. Sixty-four items applicable to both healthy subjects and dialysis patients were tested with graduate students (n = 88); six items relative to dialysis were added, and the instrument was administered to dialysis patients (n = 37). Items were based on literature review, which supported content validity. Correlations between the instrument and an overall satisfaction with life question of 0.75 (graduate students) and 0.65 (dialysis patients) supported criterion-related validity. Support for reliability was provided by test-retest correlations of 0.87 (graduate students) and 0.81 (dialysis patients) and Cronbachs alphas of 0.93 (graduate students) and 0.90 (dialysis patients).

The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature

ObjectiveThe purpose of this paper is to summarize the best evidence regarding the impact of providing patient-reported outcomes (PRO) information to health care professionals in daily clinical practice.MethodsSystematic review of randomized clinical trials (Medline, Cochrane Library; reference lists of previous systematic reviews; and requests to authors and experts in the field).ResultsOut of 1,861 identified references published between 1978 and 2007, 34 articles corresponding to 28 original studies proved eligible. Most trials (19) were conducted in primary care settings performed in the USA (21) and assessed adult patients (25). Information provided to professionals included generic health status (10), mental health (14), and other (6). Most studies suffered from methodologic limitations, including analysis that did not correspond with the unit of allocation. In most trials, the impact of PRO was limited. Fifteen of 23 studies (65%) measuring process of care observed at least one significant result favoring the intervention, as did eight of 17 (47%) that measured outcomes of care.ConclusionsMethodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians. Results suggest great heterogeneity of impact; contexts and interventions that will yield important benefits remain to be clearly defined.

Understanding African Americans' Views of the Trustworthiness of Physicians

AbstractBACKGROUND: Many scholars have written about the historical underpinnings and likely consequences of African Americans distrust in health care, yet little research has been done to understand if and how this distrust affects African Americans’ current views of the trustworthiness of physicians. OBJECTIVE: To better understand what trust and distrust in physicians means to African Americans. DESIGN: Focus-group study, using an open-ended discussion guide. SETTING: Large public hospital and community organization in Chicago, IL. PATIENTS: Convenience sample of African-American adult men and women. MEASUREMENTS: Each focus group was systematically coded using grounded theory analysis. The research team then identified themes that commonly arose across the 9 focus groups. RESULTS: Participants indicated that trust is determined by the interpersonal and technical competence of physicians. Contributing factors to distrust in physicians include a lack of interpersonal and technical competence, perceived quest for profit and expectations of racism and experimentation during routine provision of health care. Trust appears to facilitate care-seeking behavior and promotes patient honesty and adherence. Distrust inhibits care-seeking, can result in a change in physician and may lead to nonadherence. CONCLUSIONS: Unique factors contribute to trust and distrust in physicians among African-American patients. These factors should be considered in clinical practice to facilitate trust building and improve health care provided to African Americans.

The clinical significance of quality of life assessments in oncology: a summary for clinicians

BackgroundA series of six manuscripts with an introduction appeared in the Mayo Clinic Proceedings, based upon the collective effort of 30 individuals with an interest and expertise in assessing the clinical significance of quality of life (QOL) assessments. The series of manuscripts described the state of the science of QOL assessments in oncology clinical research and practice and included extensive literature and theoretical justification for the continued inclusion of QOL in oncology clinical research and practice.ObjectivesThe purpose of this paper is to produce a summary of these articles and to supplement these works with additional information that was gleaned from subsequent meetings and discussions of this material. The primary aim of this paper is to present a cogent and concise description for clinicians to facilitate the incorporation of QOL assessments into oncology clinical research and practice. The theoretical discussion is supplemented with an example of how the various ideas can be operationalized in an oncology clinical trial.

Topical Capsaicin in the Management of HIV-Associated Peripheral Neuropathy

Distal symmetrical peripheral neuropathy (DSPN) is a particularly distressing pain syndrome associated with human immunodeficiency virus (HIV) disease. Capsaicin has been found to be effective in relieving pain associated with other neuropathic pain syndromes, and is mentioned as a possible topical adjuvant analgesic for the relief of DSPN. This multicenter, controlled, randomized, double-masked clinical trial studied patients with HIV-associated DSPN and compared measures of pain intensity, pain relief, sensory perception, quality of life, mood, and function for patients who received topical capsaicin to the corresponding measures for patients who received the vehicle only. Twenty-six subjects were enrolled in the study. At the end of 1 week, subjects receiving capsaicin tended to report higher current pain scores than did subjects receiving the vehicle (Mann-Whitney test; P = 0.042). The dropout rate was higher for the capsaicin group (67%) than for the vehicle group (18%) (chi 2 test of association; P = 0.014). There were no other statistically significant differences between the capsaicin and vehicle groups with respect to current pain, worst pain, pain relief, sensory perception, quality of life, mood, or function at study entry or at any time during the 4-week trial. These results suggest capsaicin is ineffective in relieving pain associated with HIV-associated DSPN.

Exploration of the Value of Health-Related Quality-of-Life Information From Clinical Research and Into Clinical Practice

Quality-of-life (QOL) instruments used in clinical research can provide important evidence to inform decisions about alternative treatments. This is particularly true when patients, such as those with cancer who are contemplating toxic chemotherapy, face tradeoffs between quantity of life and QOL or when the primary goal of therapy is to improve how patients feel. Surrogate measures (cardiac function, exercise capacity, bone density, tumor size) are inadequate substitutes for direct measurement of QOL. Quality-of-life measures will be most valuable when they comprehensively measure aspects of QOL that are both important to patients and likely to be influenced by therapy, when the QOL measurement instruments are valid (measuring what is intended) and responsive (able to detect all important changes, even if small), and when the results are readily interpretable (determining whether treatment-related changes are trivial, small but important, or large). Researchers are finding new, imaginative ways to help clinicians understand the magnitude of treatment impact on QOL. Additionally, QOL measures may be useful in clinical practice. Recent results from well-designed randomized controlled trials suggest that information on patient QOL provided to clinicians might, in some circumstances, result in benefits for these patients. Further investigation is warranted to confirm these observations and to define the particular combination of methods and settings most likely to yield important benefits.

Fatigue and physical activity in patients undergoing hematopoietic stem cell transplant

PURPOSE/OBJECTIVES To examine the patterns of fatigue, physical activity, health status, and quality of life before and after high-dose chemotherapy and hematopoietic stem cell transplantation (HSCT) and to examine the feasibility of obtaining real-time fatigue and physical activity data. DESIGN Prospective, repeated measures. SETTING Two midwestern academic medical centers. SAMPLE Convenience sample of autologous or allogeneic patients undergoing HSCT (N = 20 baseline, N = 17 post-transplant). METHODS Subjects were assessed over a five-day period before and after HSCT for a total of 10 days. Subjects rated fatigue intensity three times daily and wore a wrist actigraph to measure physical activity. At the end of both five-day periods, subjects completed measures of perceived health status (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30) and life satisfaction Quality of Life Index). MAIN RESEARCH VARIABLES Fatigue, physical activity, perceived health status, and quality of life. FINDINGS Study results indicate that fatigue significantly increased and physical activity decreased following high-dose chemotherapy and HSCT. The decline coincided with diminished physical, emotional, role, and cognitive functioning. The symptoms that patients experienced (i.e., fatigue, pain, nausea and vomiting, sleep disturbances, appetite loss, and diarrhea) increased during the acute post-transplant period. No significant changes in life satisfaction were found. CONCLUSIONS The study findings suggest that patients receiving high-dose chemotherapy followed by HSCT experience increased fatigue, reduced physical activity, diminished functioning, and poorer quality of life immediately after transplant. Findings demonstrate that real-time fatigue and physical activity data can feasibly be collected in acutely ill patients. IMPLICATIONS FOR NURSING Patients undergoing HSCT require considerable supportive nursing care immediately following transplant. Clinicians and researchers need to strive for effective symptom management to improve the likelihood of successful outcomes.

Definitions and conceptual models of quality of life

Over the past 30 years, quality of life has evolved into a respected construct for evaluating the effectiveness of treatment in health care. The field has grown in methodological rigor and in the sophistication of instrument development. Researchers in oncology have been at the forefront in the evaluation of quality of life, recognizing the need to assess outcomes more broadly than tumor response and length of survival. In 1985, quality of life was identified as a key parameter of efficacy to be used for approval of new anticancer drugs for advanced metastatic disease in the USA. In 1988, the Division of Cancer Treatment (CTEP) of the National Cancer Institute (USA) identified improving quality of life as one of its highest priorities. Quality-of-life endpoints are integral components of cancer clinical trials throughout the world, and are required for all phase III clinical trials by the National Cancer Institute of Canada Clinical Trials Group. But what is quality of life? The literature contains a bewildering array of characterizations. The term “quality of life” is commonly used to mean health status, physical functioning, symptoms, psychosocial adjustment, well-being, life satisfaction, or happiness. Introducing the term “health-related quality of life” has not solved the problem. Because the terms have meaning in everyday language, they are frequently used without explicit definition. At the heart of the problem is the very nature of the idea of quality of life, which is uniquely personal in its essence.

Patient, clinician, and population perspectives on determining the clinical significance of quality-of-life scores

Despite the success of screening and treatment of major cancers in the United States, cancer remains a chronic condition dominated by symptoms and treatment-related adverse effects. Because of these often taxing symptoms and adverse effects, numerous studies have been conducted to document the effects of cancer diagnosis and treatment on the quality of life (QOL) of patients. But there has been limited investigation of the clinical significance of QOL scores. This article examines the clinical significance of QOL scores from 3 key perspectives: patients, clinicians, and the general population. The patients perspective includes an evaluation of the size of difference in scores that individual patients can detect and regard as important. The clinician perspective relies on whether the clinician believes the patients condition has stayed the same vs whether changes have occurred (decline or improvement). The population perspective represents a democratic process in which the input or votes of a community of people are used to determine if health state A is clinically significantly different from health state B. While many clinicians and researchers advocate for QOL to be defined from the patients perspective, the reality is that QOL is often defined by clinicians in terms of observable events. Even when measures are used in which the patient identifies how his or her life has been affected, it is often the clinician who interprets the clinical importance of this information. The clinicians perspective has value in framing an experience within the context of what is usual for a group of individuals, and the population perspective provides inputs as to how society may use limited resources. However, we conclude that a more prominent role for the patients QOL perspective is needed.

Misconceptions about breast lumps and delayed medical presentation in urban breast cancer patients

Background: Despite current recommendations for women to be screened for breast cancer with mammography every 1 to 2 years, less than half of all newly diagnosed breast cancers are initially detected through screening mammography. Prompt medical attention to a new breast symptom can result in earlier stage at diagnosis, yet many patients delay seeking medical care after becoming aware of a breast symptom. Methods: In a population-based study of breast cancer, we examined factors potentially associated with patient delay in seeking health care for a breast symptom among 436 symptomatic urban breast cancer patients (146 white, 197 black, and 95 Hispanic). Race/ethnicity, socioeconomic status, health care access and utilization, and misconceptions about the meaning of breast lumps were the key independent variables. Results: Sixteen percent of patients reported delaying more than 3 months before seeking medical advice about breast symptoms. Misconceptions about breast lumps and lacking a regular provider, health insurance, and recent preventive care were all associated with prolonged patient delay (P < 0.005 for all). Misconceptions were much more common among ethnic minorities and women of lower socioeconomic status. Conclusion: Reducing patient delay and disparities in delay will require educating women about the importance of getting breast lumps evaluated in a timely manner and providing greater access to regular health care. Cancer Epidemiol Biomarkers Prev; 19(3); 640–7