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Patients’ added value
Infertile couples mentioned eight additional main key clinical issues that were not
mentioned by the professionals: expectations on information provision, taboo on
infertility, poor alignment of care, lack of attention to work, lack of support a er
treatment, too much standard treatment according to protocols, poor physical environment and time pressure (Tables 3 and 4). Two main key clinical issues 2 were mentioned by infertile couples and professionals collectively, but interpreted
di erently, namely the lack of emotional support and the lack of respect and autonomy.
Discussion
is study shows patients’ added value to the scope of a multidisciplinary CPG on infertility including all di erent care phases. Infertile couples broadened the scope of the CPG by adding patient-centred aspects of care (i.e. expectations on information provision, taboo on infertility, poor alignment of care, lack of attention to work, lack of support a er treatment, too much standard treatment according to protocols, poor physical environment and time pressure) or addressing patient- centred aspects in professionals’ issues (i.e. the lack of emotional support and the lack of respect and autonomy).
To date, this is the rst study that focuses on patients’ added value to the scope of a multidisciplinary guideline, by comparing patients’ and professionals’ key clinical issues. Only two studies have reported on their positive experiences with patient involvement in an early phase of CPG development regarding anxiety, insomnia and kidney disease [16,36]. However, as these studies mainly focused on patients’ subjects relevant for the CPG instead of care aspects susceptible for improvement, the actual value for the development of key questions was lacking. Furthermore, since insight into the di erences between patients’ and professionals’ contributions were lacking, patients’ added value to the scope of the guideline remained unclear. e need for emotional support, improved professional behaviour and using shared decision-making principles have been described earlier [37-46]. However, in our study the need for emotional support for professionals reveals more organizational implications, since it is especially unclear to the professionals within our sample ‘who’ is responsible for providing emotional support and ‘when’ this should be o ered. For patients, this key clinical issue re ects on the lack of
Key clinical issues in fertility care
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