The PAM 13-Dutch was sent to 2542 members of the Dutch National Panel of people with Chronic illness or Disability (NPCD) in April 2010 (study A) and again to 973 members in June 2010 (study B). The second sample were patients with Asthma and/or COPD, who had also received a questionnaire in study A. By doing so, the test-retest reliability of the instrument could be established.
The Dutch National Panel of people with Chronic illness or Disability (NPCD) is a nationwide prospective panel-study in the Netherlands. NPCD consists of over 4000 people aged 15 years and over with medically diagnosed chronic disease(s) and/or moderate to severe levels of physical disability. It has been set up to provide information with respect to the consequences of chronic illness and disability from the patient’s perspective. For the purpose of this study, we only selected panel members who had been diagnosed with a somatic chronic disease. Patients are included in the panel on the basis of a the oldest medical diagnosis of a chronic disease (=index disease). The medical diagnosis or diagnoses of chronic diseases of the patients were registered by their general practitioner (GP) using the International Classification of Primary Care (ICPC). The registered chronic disease (oldest diagnosis = index disease) of the participants in study A could be classified into nine broad categories: asthma and COPD (together 38%), diabetes (12%), cardiovascular diseases (11%), rheumatic diseases (11%), neurological diseases (6%), cancer (4%), chronic digestive diseases (4%) en other chronic diseases (15%). Asthma and COPD patients were oversampled in study A because they would be approached again for study B.
We had chosen to validate the PAM 13-Dutch in the NPCD subsample of people with a chronic illness because it closely resembled the samples which were used in the validation studies in the United States and Denmark [2 (link),14 (link)]. In the USA, a group of 1515 randomly selected adults (age 45+) participated in the development study, of which 79% had at least one chronic disease [2 (link)]. In the Danish study, 467 patients (age 43 - 75 years) who were diagnosed with different aspects of dysglycaemia (Impaired Fasting Glucose, Impaired Glucose Tolerance and Type 2 diabetes) participated [14 (link)].
In both data collections, the instrument was part of a larger survey on chronic care and self-management. When entering the Panel, the participants give informed consent to the use of their data for research purposes. According to Dutch law, no further ethical approval is required.
The Dutch National Panel of people with Chronic illness or Disability (NPCD) is a nationwide prospective panel-study in the Netherlands. NPCD consists of over 4000 people aged 15 years and over with medically diagnosed chronic disease(s) and/or moderate to severe levels of physical disability. It has been set up to provide information with respect to the consequences of chronic illness and disability from the patient’s perspective. For the purpose of this study, we only selected panel members who had been diagnosed with a somatic chronic disease. Patients are included in the panel on the basis of a the oldest medical diagnosis of a chronic disease (=index disease). The medical diagnosis or diagnoses of chronic diseases of the patients were registered by their general practitioner (GP) using the International Classification of Primary Care (ICPC). The registered chronic disease (oldest diagnosis = index disease) of the participants in study A could be classified into nine broad categories: asthma and COPD (together 38%), diabetes (12%), cardiovascular diseases (11%), rheumatic diseases (11%), neurological diseases (6%), cancer (4%), chronic digestive diseases (4%) en other chronic diseases (15%). Asthma and COPD patients were oversampled in study A because they would be approached again for study B.
We had chosen to validate the PAM 13-Dutch in the NPCD subsample of people with a chronic illness because it closely resembled the samples which were used in the validation studies in the United States and Denmark [2 (link),14 (link)]. In the USA, a group of 1515 randomly selected adults (age 45+) participated in the development study, of which 79% had at least one chronic disease [2 (link)]. In the Danish study, 467 patients (age 43 - 75 years) who were diagnosed with different aspects of dysglycaemia (Impaired Fasting Glucose, Impaired Glucose Tolerance and Type 2 diabetes) participated [14 (link)].
In both data collections, the instrument was part of a larger survey on chronic care and self-management. When entering the Panel, the participants give informed consent to the use of their data for research purposes. According to Dutch law, no further ethical approval is required.
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