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THU0737-HPR Experiences and appreciation of shared medical appointment of young adults with a rheumatic disease, in transition from child to adult care
  1. L Gossens1,
  2. J Ammerlaan1,
  3. L Cazemier1,
  4. H Bouwens2,
  5. B Formsma2,
  6. J van Laar1,
  7. A Kruize1
  1. 1Rheumatology and Clinical Immunology
  2. 2Patient partner, UMC Utrecht, Utrecht, Netherlands

Abstract

Background Young adults with rheumatic diseases deal with questions and uncertainties since their disease and treatment affect both physical and socio-emotional development1,2. As part of the transition from child to adult care, the UMC Utrecht offers a shared medical appointment (SMA). During a SMA, four to six patients are seen together in the presence of a doctor and nurse specialist. Compared to an individual consultation with a doctor or nurse, a SMA is offering extensive exchange of information and shared experiences focussed on everyday life, as sport, study, work and treatment3. During a SMA, patients learn from each other, which supports self-management. In practice, the care providers notice that young adults are reluctant to join a SMA, they hesitate to have a consultation in presence of their peers. When invited, most patients, however, do attend a SMA, and it is unknown how these young adults experience and appreciate the SMA. This evaluation is a first step of a larger project. The results will be deepened and supplemented with the findings on interviews with young adults and professionals, in order to give an advice for further development of the SMA in our clinic.

Objectives Evaluating experiences and appreciation of SMA in transition patients in order to further develop the SMA in our clinic.

Methods In the period of January 2014 till December 2016, patients in transition who participated in SMA were asked to fill in an evaluation questionnaire. This questionnaire focussed on expectations, quality of medical care compared to an individual consultation, information about disease and treatment during a SMA and the presence of other young adults. Data was analysed by the researchers and patient partners using SPSS and thematic analysis.

Results Forty-five patients filled in the evaluation questionnaire, among them 35 women, with an average age of 19.6 years. The majority had a form of juvenile idiopathic arthritis (n=39); with average disease duration of 9,4 years and most were using a DMARD and/or biological (n=35). The results showed that participating patients were just as satisfied with the medical care in a SMA compared to a regular consultation; they indicate that more information was given in a SMA and the presence of peers was experienced as pleasant. Most appreciated were sharing experiences, individual stories and tips. Personal attention and lack of privacy were perceived as less pleasant, moreover young adults expressed to find it difficult to discuss personal issues.

Conclusions Although it is difficult to motivate the young adults to attend the SMA, whenever they do attend, they appreciate a SMA in positive way, especially on benefits of sharing information and meeting peers, when offered in addition to individual consultations with doctor and nurse.

References

  1. Ammerlaan JW, Scholtus LW, Bijlsma JWJ, Prakken ABJ, Kruize AA. An urge for change: Transitional care for young adults with juvenile idiopathic arthritis. Patient Education and Counseling 2013;92:127–129.

  2. Foster HE, Minden K, Clemente D, Leon L, McDonagh JE, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis 2016;0:1–8.

  3. Noffsinger E. Running group visits in your practice. New York: Springer, 2009.

References

Disclosure of Interest None declared

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