IFSV > Afdelinger > Sundhedstjeneste > Forskning > forskningsprojekter > Thyroid QoL

14. oktober 2008

Development of a thyroid-specific Quality of Life Questionnaire

Formål

To develop a validated questionnaire measuring thyroid-specific quality of life, applicable to patients with any benign thyroid disease.

Projektbeskrivelse

Background: Thyroid diseases are common. They encompass hyperthyroidism, hypothyroidism and goiter. Previous research as well as clinical experience indicates that some patients suffer from reduced quality of life, despite adequate treatment. However, this research has methodological shortcomings, and particularly, a disease specific HRQL-questionnaire is lacking.
Several treatment options exist for each disease. For example, hyperthyroidism can be treated with medication, radioactive iodine or surgery; however, no studies comparing the HRQL-impact of each of these treatments have been conducted.
Purpose: To develop and validate a thyroid-specific HRQL-instrument
Methods: To ensure coverage of all relevant issues, the development of the questionnaire is based on a systematic review of the literature and interviews with 13 endocrine experts and 100 patients, followed by a pretest in 100 new patients.  After a revision, responses from 1000 consecutive, weel-described thyroid patients will be collected, for the purpose of a scientific evaluation of the measurement properties of the questionnaire. This is done by classical psychometric methods (Cronbach's α, multitrait analyses, e.g.) as well as modern methods (item response theory, structural equation modelling for categorical data, e.g.).
Relevance: Such a questionnaire is a prerequisite for a sound description of the HRQL of thyroid patients and thereby for the possibility of answering important questions like whether these patients do in fact have reduced quality of life in the long term and whether there is differences with regards to quality of life and whether these treatments can be optimized. Further, it can form the documentation behind better patient information, be included in audits of quality of care and perhaps as a supplementary screening instrument for patients controlled by their general practitioner, to determine when it is time for (re-)referral to a specialist or even in the evaluation of treatment-effect in the individual patient.
Background: Thyroid diseases are common. They encompass hyperthyroidism, hypothyroidism and goiter. Previous research as well as clinical experience indicates that some patients suffer from reduced quality of life, despite adequate treatment. However, this research has methodological shortcomings, and particularly, a disease specific HRQL-questionnaire is lacking.
Several treatment options exist for each disease. For example, hyperthyroidism can be treated with medication, radioactive iodine or surgery; however, no studies comparing the HRQL-impact of each of these treatments have been conducted.
Purpose: To develop and validate a thyroid-specific HRQL-instrument
Methods: To ensure coverage of all relevant issues, the development of the questionnaire is based on a systematic review of the literature and interviews with 13 endocrine experts and 100 patients, followed by a pretest in 100 new patients.  After a revision, responses from 1000 consecutive, weel-described thyroid patients will be collected, for the purpose of a scientific evaluation of the measurement properties of the questionnaire. This is done by classical psychometric methods (Cronbach's α, multitrait analyses, e.g.) as well as modern methods (item response theory, structural equation modelling for categorical data, e.g.).
Relevance: Such a questionnaire is a prerequisite for a sound description of the HRQL of thyroid patients and thereby for the possibility of answering important questions like whether these patients do in fact have reduced quality of life in the long term and whether there is differences with regards to quality of life and whether these treatments can be optimized. Further, it can form the documentation behind better patient information, be included in audits of quality of care and perhaps as a supplementary screening instrument for patients controlled by their general practitioner, to determine when it is time for (re-)referral to a specialist or even in the evaluation of treatment-effect in the individual patient.

Tilknyttede forskere

Torquil Watt, Jakob Bue Bjorner, Mogens Grønvold, Åse Krogh Rasmussen, Steen Joop Bonnema, Laszlo Hegedüs, Ulla Feldt-Rasmussen.

Publikationer

 - Watt T, Groenvold M, Rasmussen ÅK, Bonnema SJ, Hegedüs L, Bjorner JB, Feldt-Rasmussen U. Quality of life in patients with benign thyroid disorders. A review. Eur J Endocrinol. 2006;154:501–510.

 - Watt T, Hegedus L, Rasmussen AK, Groenvold M, Bonnema SJ, Bjorner JB, Feldt-Rasmussen U. Which domains of thyroid-related quality of life are most relevant? Patients and clinicians provide complementary perspectives. Thyroid 2007;17:647-654.

 - Watt T, Feldt-Rasmussen U, Rasmussen AK, Hegedüs L, Bonnema SJ, Groenvold M, and Bjorner, JB. (2008). [Measurement of health-related quality of life in thyroid patients]. Ugeskr Laeger 2008;170:850-852.

 - Watt T, Rasmussen AK, Groenvold M. Bjorner JB, Watt SH, Bonnema SJ, Hegedus L, and Feldt-Rasmussen U. Improving a newly developed patient-reported outcome for thyroid patients, using cognitive interviewing. Qual Life Res 2008;17:1009-1017

 - Watt T, Bjorner JB, Groenvold M. Rasmussen AK, Bonnema SJ, Hegedus L, and Feldt-Rasmussen U. Establishing construct validity for the thyroid-specific patient reported outcome measure (ThyPRO): An initial examination. Qual Life Res 2008 (submitted)