Cross-cultural validity of the thyroid-specific quality-of-life patient-reported outcome measure, ThyPRO.

BACKGROUND AND PURPOSE: Thyroid diseases are common and often affect quality of life (QoL). No cross-culturally validated patient-reported outcome measuring thyroid-related QoL is available. The purpose of the present study was to test the cross-cultural validity of the newly developed thyroid-related patient-reported outcome ThyPRO, using tests for differential item functioning (DIF) according to language version. METHODS: The ThyPRO consists of 85 items summarized in 13 multi-item scales and one single item. Scales cover physical and mental symptoms, well-being and function as well as social and daily function and cosmetic concerns. Translation applied standard forward-backward methodology with subsequent cognitive interviews and reviews. Responses (N = 1,810) to the ThyPRO were collected in seven countries: UK (n = 166), The Netherlands (n = 147), Serbia (n = 150), Italy (n = 110), India (n = 148), Denmark (n = 902) and Sweden (n = 187). Translated versions were compared pairwise to the English version by examining uniform and nonuniform DIF, i.e., whether patients from different countries respond differently to a particular item, although they have identical level of the concept measured by the item. Analyses were controlled for thyroid diagnosis. DIF was investigated by ordinal logistic regression, testing for both statistical significance and magnitude (ΔR (2) > 0.02). Scale level was estimated by the sum score, after purification. RESULTS: For twelve of the 84 tested items, DIF was identified in more than one language. Eight of these were small, but four were indicative of possible low translatability. Twenty-one instances of DIF in single languages were identified, indicating potential problems with the particular translation. However, only seven were of a magnitude which could affect scale scores, most of which could be explained by sample differences not controlled for. CONCLUSION: The ThyPRO has good cross-cultural validity with only minor cross-cultural invariance and is recommended for use in international multicenter studies.

Content validity of the PedsQL™ 3.2 Diabetes Module in newly diagnosed patients with Type 1 diabetes mellitus ages 8-45.

OBJECTIVES: The content validity of the 28-item PedsQL™ 3.0 Diabetes Module has not been established in research on pediatric and adult patients with newly diagnosed Type 1 diabetes across a broad age range. This study aimed to document the content validity of three age-specific versions (8-12 years, 13-18 years, and 18-45 years) of the PedsQL™ Diabetes Module in a population of newly diagnosed patients with Type 1 diabetes. METHODS: The study included in-depth interviews with 31 newly diagnosed patients with Type 1 diabetes between the ages of 8 and 45 years, as well as 14 parents and/or caregivers of child and teenage patients between the ages of 8 and 18 years of age; grounded theory data collection and analysis methods; and review by clinical and measurement experts. RESULTS: Following the initial round of interviews, revisions reflecting patient feedback were made to the Child and Teen versions of the Diabetes Module, and an Adult version of the Diabetes Module was drafted. Cognitive interviews of the modified versions of the Diabetes Module were conducted with an additional sample of 11 patients. The results of these interviews support the content validity of the modified 33-item PedsQL™ 3.2 Diabetes Module for pediatric and adult patients, including interpretability, comprehensiveness, and relevance suitable for all patients with Type 1 Diabetes. CONCLUSIONS: Qualitative methods support the content validity of the modified PedsQL™ 3.2 Diabetes Module in pediatric and adult patients. It is recommended that the PedsQL™ 3.2 Diabetes Module replaces version 3.0 and is suitable for measuring patient-reported outcomes in all patients with newly diagnosed, stable, or long-standing diabetes in clinical research and practice.

Patients' experiences with cancer-related fatigue: a review and synthesis of qualitative research.

PURPOSE/OBJECTIVES: To systematically review published qualitative reports of descriptions of fatigue by patients with cancer and how cancer-related fatigue (CF) affects their lives. DATA SOURCES: MEDLINE®, CANCERLIT®, Cochrane Database of Systematic Reviews, and the Cumulative Index to Nursing and Allied Health Literature. DATA SYNTHESIS: Two researchers conducted independent reviews of 667 patient quotes found in 154 articles published from 1996-2009 to identify concepts and language used to describe CF. CONCLUSIONS: CF is more intense than the tiredness patients recalled from before diagnosis or treatment. Published patient quotes fail to adjudicate whether CF should be approached as a single symptom or a more complex symptom cluster. IMPLICATIONS FOR NURSING: Systematic study of patients with different cancer types and stages is needed to identify effective, valid, and reliable self-reported assessments of CF for clinical practice and trials.

Evaluation of a cancer pain education module.

PURPOSE/OBJECTIVES: To assess whether a case-based cancer pain education module would lead to acquisition and retention of knowledge and attitudes at the graduate nursing student level. DESIGN: Quasi-experimental pretest, post-test, and follow-up. SETTING: Three nursing schools in the New England area. SAMPLE: 92 graduate nursing students. METHODS: An oncology nurse specialist delivered seven two- to four-hour seminars integrated in existing pharmacology, primary care, or adult health courses. Participants' cancer pain knowledge was assessed at four time points with a paper-and-pencil test: before the seminar, immediately after, and approximately 6 and 24 months after the seminar. MAIN RESEARCH VARIABLE: Cancer pain knowledge. FINDINGS: The intervention was effective in improving students' knowledge of cancer pain management and assessment (p = 0.0001), and the effect was retained at 6 and 24 months (p = 0.0001 and p = 0.0024, respectively). CONCLUSIONS: Policymakers, clinicians, and professional organizations have recommended providing cancer pain education during professional training to overcome the continuing problem of the undertreatment of cancer pain. The education module used was effective in changing students' knowledge of cancer pain management, and the results suggest that this knowledge is lasting. IMPLICATIONS FOR NURSING: Early cancer pain education for nurses may play an important role in improving pain control for patients with cancer. Although this study did not evaluate the application of cancer pain knowledge to clinical practice, the results support the notion that advanced practice nurses can improve their cancer pain management knowledge and attitudes while in training. One implication is that this shift in attitudes and knowledge will translate to effective management of pain in varied healthcare settings.