Is it possible to measure the impact of a developmental disorder diagnosis received in adulthood? An attempt at follow-up and discussion of difficulties encountered in the process
Lena Nylander1,2, Maria Holmqvist1, Sven Jönsson1, Lars Gustafson3, Christopher Gillberg2
1Department of Psychiatry, Clinical Sciences, Lund University, Lund, Sweden; 2Child and Adolescent Psychiatry, Institute of Neuroscience and Physiology, Göteborg University, Göteborg, Sweden; 3Department of Geriatric Psychiatry, Clinical Sciences, Lund University, Lund, Sweden
Objective: Assessment of patients’ and their significant others’ (SOs’) views of receiving a diagnosis of a developmental disorder, namely attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), or Tourette’s syndrome (TS), in adulthood.
Method: One to three years after clinical examination and diagnosis, a questionnaire was sent to 225 consecutive patients.
Results: One hundred twenty-one patients responded (53.7%). The number of ASD patients in contact with habilitation services and with independent living had increased, as also had the number of ADHD patients receiving medication. The patients and SO expressed satisfaction with the diagnostic process.
Conclusion: ADHD or ASD diagnoses received in adulthood did not, in the patients’ opinion, have a great impact in a 1- to 3-year perspective. However, since a large number of the responding patients as well as SOs were positive to the examination as such, it is suggested that the so-called neuropsychiatric diagnostic procedure may lead to rapport and thus understanding of psychiatric patients, irrespective of diagnosis. The low number of respondents is an indication that mailed questionnaires may not be the optimal method to follow-up the impact of the developmental disorder diagnosis in these patients. There are also difficulties regarding the choice of a relevant control group and regarding measurement of patients’ opinions.
Significant outcomes: According to the patients themselves, rather small changes were brought about by receiving an ADHD or ASD diagnosis in adulthood. Patients who were assigned an ADHD or ASD diagnosis were more satisfied with the diagnostic procedure and its consequences than the reference group, consisting of patients who were examined, but did not meet the criteria for an ADHD, ASD, or TS diagnosis. Patients and SOs had a positive view of the assessment procedure.
Limitations: Forty-six percent of the included patients did not respond. The reference group was a diagnostically heterogeneous group of patients, most of whom had severe mental disorders. The availability of services may be a confounding factor, influencing the patients’ views of the present situation and the benefit of the diagnosis. There was no questionnaire given to the patients at baseline, and the mailed questionnaire had not been validated. Considering that every patient or SO answered several questions, the differences at P = 0.05 may not actually be significant if corrected for multiple comparisons.
Keywords: attention-deficit/hyperactivity disorder, autism spectrum disorder, adults, assessment, follow-up
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