Pertinence de la référence en orthopédie pédiatrique des cas suspectés de scoliose idiopathique : association avec la morbidité perçue et les itinéraires de soins des patients

Adolescent Idiopathic Scoliosis (AIS) is the type of musculoskeletal deformity most frequently encountered in the pediatric population with a prevalence of approximately 2.0%.  Since the Canadian school screening programs were discontinued in the 1980s, data detailing health service utilization or typical reference patterns for patients with suspected AIS are no longer available.  Without such programs, changes in the utilization patterns of pediatric orthopedic specialized services are anticipated.  The thesis therefore aims to study the appropriateness of referral of youths with suspected AIS.  It comprises three main objectives: 1) To validate a measurement tool based on perceived morbidity (perception of the symptoms) in the orthopedic pediatric patient population,  2) To study the relationships between morbidity perceived by lay persons (the young patient and his parent), and the objective morbidity determined by medical professionals,  3) To characterize the healthcare service pathways of suspected AIS cases upstream of their first orthopedic consultation in order to define a taxonomy of the pathways and analyse their relationships with the appropriateness of referral.  In 2006-2007, an extensive survey conducted in the five clinics serving southwest Quebec recruited 831 patients.  They were categorized using criteria for the appropriateness of referral (inappropriate, appropriate or late) based on the amplitude of the main spinal curve and skeletal maturity at the first visit.  Lay perceived morbidity was operationalized according to the seriousness, urgency, pain, self-image and general perceived health.  Medical and paramedical visits upstream of the pediatric orthopedic consultation were documented with questionnaires to the families.  Based on Andersen’s Health Behavior Model, the individual (facilitating and enabling), professional and systemic factors were considered as control variables in the study of associations between perceived morbidity or healthcare trajectories, and appropriateness of referral.   The main conclusions of the thesis are: i) Reliable (Cronbach alpha between 0.79 and 0.86) and valid (construct, concurrent and discriminant validity) measurement tools are available to evaluate the perceived morbidity in the French-speaking adolescent population that consults in pediatric orthopedics, ii) Lay stakeholders play an important role in the suspicion of scoliosis (53% of cases) with their perceived morbidity directly related to the objective morbidity, and therefore associated to the appropriateness of referral,  iii) The current orthopedic casemix is considered suboptimal with regards to the appropriateness of referral, and the actual mechanisms for reference are in fact responsible for a large number of inappropriate (38%) and late (18%) referrals to specialized pediatric orthopedic services,  iv) Adolescents with suspected AIS consult with a wide range of health specialists resulting in a large variety of healthcare pathways upstream of the orthopedic consultation, and v) Continuity of healthcare services, mainly through a regular source of care for the child, is favourable to a reduction in late referrals (OR=0.32 [0.17-0.59]).  This thesis is intended to contribute to the advancement of conceptual, empirical and applied knowledge leading to a series of knowledge translation initiatives targeting primary health care providers.  Such initiatives have the potential to increase awareness of the condition, to support decision-making as well as to improve the coordination of consultation requests, thus promoting appropriateness and timeliness of referrals.

Keyphrases: Scoliosis, Quality of life questionnaire, Perception of morbidity, Healthcare services utilization, Health behavior model, Appropriateness of referral, Health care pathways, Specialized care, Orthopedics