Berg, J.J.G. van den (2016) Pilot study to examine the feasibility and patients opinions of providing patients in an Asthma/COPD service with their own medical records. thesis, Medicine.
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Abstract
Background: In general, self-management is an important aspect of chronic diseases. In asthma and COPD patients, self-management is poor. Previous research by our department has shown that patients would like to be more involved in their treatment. Providing access to their own medical results, possibly through a patient web portal (PWP), might enhance self-management. Aim: To assess the feasibility of offering personal medical records to patients in an Asthma/COPD service (AC service) in the North of the Netherlands, which provides support to GPs concerning the diagnostics and treatment of respiratory symptoms. Further we aim to assess the opinions of patients in the AC service with respect to these personal medical records, and to investigate if there is a relation between their opinions and patient characteristics like age, gender, living area, disease severity, illness perceptions and self-efficacy. This study basically is a preliminary study to inventorize how medical records should be offered on a proposed future PWP for the AC service. Method: We included 46 patients (19.6% male, mean age 61.0 years, range [20-86], 41.3% asthma, 30.4% COPD) who had their lung function assessed in the AC service. Three weeks after the assessment these patients received the results and the consequentional treatment advices by mail, according to three formats. We examined participants’ opinions and preferences with regard to this information through our self-developed Evaluation Questionnaire. We also discussed the formats with professionals from the Dutch Lung Foundation. To examine whether any differences existed between participants with certain characteristics (low or high disease burden, certain illness perceptions, low or high self-efficacy, male or female gender, young or old age), we additionally used the Asthma Control Questionnaire (ACQ), Clinical COPD Questionnaire (CCQ), the Dutch version of the Brief Illness Perceptions Questionnaire (IPK-Q) and Dutch General Self-Efficacy Scale (DGSES) to assess respectively disease severity, illness perceptions and self-efficacy. Findings: All participants’ test results were sent on time. 33 participants returned the questionnaires. Only about half of them (n=15, 45.5%) had been notified by their GP about the results before they received them by mail. The vast majority of participants wanted to view their lung function assessment results again (n=31, 96.9%), preferred to view all formats (n=27, 81.8%), considered the information understandable (format 1: n=31 (93.9%), format 2: n=25 (75.8%), format 3: n=29 (90.6%)) and used positive words to describe the complete records (n=32, 97%). Some information however, like diagnosis and disease severity, caused some patients to experience negative emotions (n=6, 18.2% and n=5, 15.1% respectively). Three out of four participants (n=25, 75.8%) considered the information to be helpful in dealing with their respiratory symptoms. Format 1 received the highest rating (n=32, mean 8.1, range [5.0-10.0], on a scale of 1 to 10) of all three formats. Surprisingly, a minority of participants indicated they would like to view their lung function assessment results on the computer as compared to on paper (computer: n=8 (24.4%), paper: n=26 (78.8%)). We found that participants with a high asthma burden (ACQ≥ 1.5) experienced negative emotions due to viewing their lung function assessment results significantly more often (high: n=5, mean 1.93, low: n=16, mean 2.75, p=0.026) and are significantly less likely to adhere to the advices given than participants with a low asthma burden (high: n=5, mean 2.50, low: n=14, mean 3.00, p=0.015). Furthermore, there was a significant negative correlation between perceived consequences of the disease and emotions experienced due to the assessment results (.-374, p=0.032). Also, male participants had significantly more difficulty understanding the information than female participants (male: n=6, mean 2.18, female: n=27, mean 2.86, p=0.008). No significant interactions were found between COPD burden, other illness perceptions, self-efficacy, age, living area and preferences. The professional of the Dutch Lung Foundation organized a meeting with asthma and COPD patients and users of a PWP. The conclusion of this meeting was that it would be the best option to have the GP discuss the results of the lung function assessment with the patient first before these results become available to the patient. Concerning the content of the patient information, they suggested to add links to videos about asthma and COPD and to a legend of the ACQ as well, and to replace certain words with words that are easier to understand. The text block ‘spirometry’ was considered to be too technical. Conclusion: This study has shown positive results for offering personal medical records to patients in the AC service, both in terms of feasibility and attitudes of patients. It is important to note however, in a considerable proportion of participants the GP had not discussed the lung function assessment results with them. Caution should be taken when offering these records to patients with a high symptom burden or distressing outcomes before the GP has informed them, as the information may elicit negative emotions.
| Item Type: | Thesis (Thesis) |
|---|---|
| Supervisor name: | Supervisor: and Molen, Prof. T. van der and Daily supervisor: and Metting, E.I. and Location: UMCG, Department of General Practice |
| Faculty: | Medical Sciences |
| Date Deposited: | 25 Jun 2020 10:44 |
| Last Modified: | 25 Jun 2020 10:44 |
| URI: | https://umcg.studenttheses.ub.rug.nl/id/eprint/584 |
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