Struiksma, A.L. (2016) Systemische sclerose (SSc) in Friesland: cross-sectioneel onderzoek naar patiënt- en ziektespecifieke kenmerken, informatiebehoefte en zorgconsumptie. thesis, Medicine.
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Abstract
Background and objectives: Aim of this study is to identify the patients in Friesland and their characteristics to assess whether the development of a care pathway in the Medical Centre of Leeuwarden (MCL) is possible with regard to the standards set by the The Dutch Society for Rheumatology (Nederlandse Vereniging voor Reumatologie, NVR). Furthermore, the needs for information and preferences regarding a care pathway SSc are being investigated. Also the healthcare use will be determined, to enable comparison of the current way of care and the recommendations about the frequency of follow-up and investigations by the NVR. Materials and methods: Patients meeting the criteria for SSc where included if being seen in the MCL between January 2005 and July 2015 for diagnosing or treatment. Patient- and disease characterises where retrieved from the electronic patient record. A questionnaire was sent to the patients, consisting questions about sociodemographic features, daily functioning (SSc HAQ), quality of life (SF-36), information needs and preferences towards healthcare delivery. In case of no missing data concerning health care consumption, the number of investigations and contacts with several medical specialists in the preceding 24 months where retrieved from the medical record. After that, comparison with the recommendations by the NVR was made. Results: Of the 228 patients investigated, 88 met the criteria. Of them, 20% have once been referred to an academic hospital, whereas 10% is still being treated elsewhere. The proportion diffuse SSc is 10% and in 72% of the cases there is involvement of the internal organs, with the gastro-intestinal tract being mostly affected (52%), followed by the lungs (23%). The mean SSc HAQ score is 1,00 with median 1,01 and the SF-36 has a mean mental component score of 48,4 (median 52,5) and mean physical component score of 37,0 (median 39,1). The majority (64%) of the patients reported a moderate to high need for the delivery of a form of multidisciplinary care in addition to regular outpatient care. Topics with the highest proportion of patients reporting a moderate to high need of information are meaning of test results (77%), knowing when to consult a doctor (75%) and the importance of medical tests (73%). A higher number of information needs is associated with a lower physical component score (β=1,84; p<0,05) and an impaired physical functioning (β= -0,196; p<0,01). The extend of need for information showed no correlation with neither sociodemographic variables as age, sex, educational level, having a partner or having a job, nor with the disease characterises subtype SSc and disease duration. The rheumatologist was indicated as the preferred source of information by 81% of the patients, followed by written information in book/leaflet (61%) or Internet (56%). Drawn from the medical records of 68 patients, it was seen that patients had visited the rheumatologist 5,0 times in the preceding 24 months. With regard to SSc, 68% of the patients visited a cardiologist with a mean of 1,6 visits and 54% of the patients visited a pulmonologist with a mean of 2,2 visits. Concerning the recommendations by the NVR, blood tests have been performed sufficient in 65% of the cases, whereas urine tests only in 31%. ECG and spirometry were performed correctly in 25% respectively 24% of the patients. Conclusion: The patients in our study are less complex in relation to known academic data, concerning the proportion diffuse SSc and involvement of organs. On the other hand, our patients report more physical disability. With respect to the requirements, it seems feasible that MCL becomes a regional SSc centre. Because of the high healthcare use, a care pathway combining diagnosing and treatment of multiple medical specialists is recommended. In 6 addition, most of the patients reported a preference for a multidisciplinary approach, at which medical specialist are preferred over supporting disciplines. The current study has shown that patients have a significant need for information, especially about medical topics. Therefore, the rheumatologist has to be conscious to incorporate patient education in daily practise, especially towards patients with decreased physical functioning. Implementation of the advices of the NVR will lead to increased number of visits to the cardiologist and pulmonologist and medical tests and so the health care use will increase. On the other hand it is expected that patient’s satisfaction and most of all the quality of care will increase, contributing to improvement of quality of life of patients.
| Item Type: | Thesis (Thesis) |
|---|---|
| Supervisor name: | Fac. begeleider and Bos, Dhr. dr. R. reumatoloog |
| Faculty: | Medical Sciences |
| Date Deposited: | 25 Jun 2020 10:41 |
| Last Modified: | 25 Jun 2020 10:41 |
| URI: | https://umcg.studenttheses.ub.rug.nl/id/eprint/263 |
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