scholarly journals Establishing content-validity of a disease-specific health-related quality of life instrument for patients with chronic hypersensitivity pneumonitis

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Kerri I. Aronson ◽  
Maha Ali ◽  
Evgeniya Reshetynak ◽  
Robert J. Kaner ◽  
Fernando J. Martinez ◽  
...  
Keyword(s):  
Content Validity ◽  
Hypersensitivity Pneumonitis ◽  
Recall Period ◽  
Health Related Quality ◽  
Hrqol Instrument ◽  
Response Options ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Background Chronic Hypersensitivity Pneumonitis (CHP) is caused by an immune mediated response in the lung tissue after exposure to an inhaled environmental antigenic stimulant. We previously documented the ways in which CHP impacts patients’ lives and have now developed a disease-specific instrument, the CHP-HRQOL instrument, to measure health-related quality of life (HRQOL). The objective of this study was to assess content validity for the CHP-HRQOL. Methods Cognitive interviews were conducted among adults with CHP. The instrument was revised and refined between each round of interviews. Feedback was obtained on the instructions, items, response options, and recall period. Items where participants had difficulty with comprehension, wording, or misinterpretation were marked by the interviewer and participant feedback was reviewed to make revisions, add or delete items when appropriate. Readability statistics were calculated using Flesch-Kincaid grade level and reading ease scores. Results Ten participants were interviewed over three rounds, with revisions made to the questionnaire in an iterative process. In the initial 39 item instrument, we identified 7 items where two or more participants reported difficulty. Participants preferred a four-week recall period (compared to a two-week recall period) and response options with a 5-point response scale. The final version of the CHP-HRQOL includes 40 items with a median reading level between 6th and 7th grade. Conclusion The CHP-HRQOL instrument demonstrated high content validity and is ready for psychometric testing in further validation studies.

scholarly journals Explanatory Factors for Disease-Specific Health-Related Quality of Life in Women with Anorexia Nervosa

2021 ◽  
Vol 10 (8) ◽  
pp. 1592
Author(s):  
Laura Al-Dakhiel Winkler ◽  
Claire Gudex ◽  
Mia Beck Lichtenstein ◽  
Michael Ejnar Røder ◽  
Carol E. Adair ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Eating Disorder ◽  
Normal Weight ◽  
Health Related Quality ◽  
Explanatory Factors ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific ◽  
Specific Health

A better understanding of explanatory factors for disease-specific health-related quality of life (HRQoL) in anorexia nervosa (AN) could help direct treatment providers to aspects of the most relevance for patient wellbeing and recovery. We aimed to investigate whether factors associated with HRQoL are the same for women with AN and normal-weight controls. The participants in this study were women with AN recruited from specialized eating disorder centers in Denmark and healthy, normal-weight controls invited via online social media. Participants completed online questionnaires on medical history, disease-specific HRQoL (Eating Disorders Quality of Life Scale, EDQLS) and generic HRQoL (SF-36), eating disorder symptomatology, depression, psychological wellbeing, and work and social adjustment. Questionnaires were fully completed by 211 women with AN (median age 21.7 years) and 199 controls (median age 23.9 years). Women with AN had poorer scores on all measures, i.e., worse HRQoL, psychological health, and work/social functioning. Eating disorder symptomatology affected EDQLS score in both groups, but poorer HRQoL in women with AN was also significantly associated with worse scores on bulimia, maturity fears, depression, vitality, and with older age. The factors investigated together explained 79% of the variance in EDQLS score. Management of disordered self-assessment and thought processes may be of particular importance to women with AN. Greater emphasis on these aspects alongside weight gain could enhance patient–clinician alliance and contribute to better treatment outcomes.

scholarly journals Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nina Tusa ◽  
Hannu Kautiainen ◽  
Pia Elfving ◽  
Sanna Sinikallio ◽  
Pekka Mäntyselkä
Keyword(s):  
Quality Of Life ◽  
Patient Care ◽  
Usual Care ◽  
Care Plan ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

The UFS-QOL, a New Disease-Specific Symptom and Health-Related Quality of Life Questionnaire for Leiomyomata

2002 ◽  
Vol 99 (2) ◽  
pp. 290-300 ◽  
Author(s):  
James B. Spies ◽  
Karin Coyne ◽  
Noureddine Guaou Guaou ◽  
Deneane Boyle ◽  
Kerry Skyrnarz-Murphy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Questionnaire ◽  
New Disease ◽  
Health Related Quality ◽  
Specific Symptom ◽  
Quality Of Life Questionnaire ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Health-related quality of life of food allergic patients measured with generic and disease-specific questionnaires

Allergy ◽  
2010 ◽  
Vol 65 (8) ◽  
pp. 1031-1038 ◽  
Author(s):  
B. M. J. Flokstra-de Blok ◽  
J. L. Van Der Velde ◽  
B. J. Vlieg-Boerstra ◽  
J. N. G. Oude Elberink ◽  
A. DunnGalvin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

scholarly journals Cross-cultural adaptation and validation of the 22-item sinonasal outcome test (SNOT-22) in German-speaking patients: a prospective, multicenter cohort study

2021 ◽  
Author(s):  
Tobias Albrecht ◽  
Achim Georg Beule ◽  
Tanja Hildenbrand ◽  
Kathrin Gerstacker ◽  
Mark Praetorius ◽  
...  
Keyword(s):  
Sinus Surgery ◽  
Health Related Quality ◽  
Healthy Individuals ◽  
Specific Question ◽  
Related Quality ◽  
German Speaking ◽  
Health Related ◽  
Snot 22 ◽  
Disease Specific

Abstract Purpose Chronic rhinosinusitis (CRS) is a common condition associated with a significant reduction of the health-related quality of life. One of the most widely used assessment tools in CRS is the disease-specific, health-related questionnaire SNOT-22. The aim of this study was to translate and validate the SNOT-22 into the German language. Methods The questionnaire was translated using the forward–backward translation technique. After the translation its reliability, validity, and sensitivity were evaluated. For this purpose, the questionnaire was completed by patients diagnosed with CRS before, 3 months and 1 year after endoscopic sinus surgery and by healthy individuals as controls at three university hospitals in Germany. The individual scores of the questionnaire before surgery was correlated with the Lund–Mackay score as well as a global disease-specific question. Results A total of 139 CRS patients and 31 healthy individuals participated in the study. Internal consistency at all timepoints was very good, with Cronbach’s alpha scores of 0.897, 0.941, and 0.945. The questionnaire was able to discriminate between CRS patients and control subjects (p < 0.0001) and scores improved significantly 3 month and 1 year after sinus surgery (p < 0.0001), indicating a good test–retest reliability, validity, and responsiveness. A significant correlation to the single global disease-specific question could be found (p < 0.0001), but no correlation with the Lund–Mackay score. Conclusion The German Version of the SNOT-22 is a reliable, valid, and sensitive instrument for measuring health-related quality of life in patients with CRS. It can be recommended for clinical practice and outcome research for German-speaking patients.

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