Authors (including presenting author) :
Wu KW (1), Shih FY (1), Pon YL (1), Ma TC (1), Ng YH (1), Ng HH (1), Ho SKL (1), Cheng SWS (1), Luk HM (1)
Affiliation :
(1) Department of Clinical Genetics, Hong Kong Children’s Hospital
Introduction :
Neurodiversity is a concept changing traditional stigmatized view on neurodevelopmental conditions as natural variations within the human population. Various genetic factors have been identified in studies associated with different neurodevelopmental conditions, elucidating the complex gene-environment interplay. Recent studies highlighted the benefits of innovative service approaches in neurodiversity genetics clinic. The establishment of genetic counsellor-led specialized Neurodiversity Genetics Clinic marks a significant advancement in healthcare, focusing on personalized, patient-centered and evidence-based care. This new service model integrates genetic diagnosis with psychological and social support, fostering an inclusive environment for neurodiverse individuals.
Objectives :
This study investigates patient and family satisfaction, clinical outcomes, and service delivery efficacy at the newly implemented Neurodiversity Genetics Clinic in Hong Kong Children’s Hospital.
Methodology :
Employing a cross-sectional approach, the study involved phone surveys and interviews with individuals who attended Neurodiversity Genetics Clinic. The phone survey utilized a validated 'Visit-Specific Satisfaction Instrument' to quantitatively assess public satisfaction with the new service model, while the phone interviews were conducted to explore qualitative aspects of satisfaction, clinical outcome, and effectiveness of service delivery.
Result & Outcome :
A total of 55 participants were recruited to evaluate their experience with the new service model. All respondents completed questionnaires, and 38 participated in phone interviews. All participants expressed satisfaction with key aspects of care delivery, including the thoroughness of explanations provided, the technical proficiency and interpersonal qualities of practitioners, the time spent with healthcare professionals, and the overall visit experience, all scoring above 3. However, 32.7% of participants (18/55) rated the clinic's location convenience as 2 or below.
Interviews revealed that most respondents valued reminder calls and educational pamphlets on neurodiversity conditions. Some proposed an email-based communication to enhance accessibility. Despite the complexity of genetic information, participants found the explanations regarding their conditions and genetic testing to be detailed and comprehensive. They appreciated the opportunities for clarification and valued the consultation as instrumental in their decision-making process regarding testing.
Overall, participants acknowledged the informative support from healthcare providers, though some expressed a need for additional time to grasp the complex genetic concepts. Notably, all participants affirmed their decisions regarding genetic testing, indicating high confidence and satisfaction with their choices.
