Abstract
Little is known about the priorities of patients undergoing surgery for idiopathic scoliosis. This study explores the priorities of adolescents and contrasts them from their parents and their surgeons. Fifty-five pairs of children and parents underwent structured interviews separately, to explore their concerns, desires and expectations both about scoliosis and surgery. Surgeons of these patients and from across Canada completed a similar questionnaire. We found a significant mismatch between child, parent and surgeon priorities. This mismatch has implications on matters relating to decision making, informed consent, understanding of patient satisfaction, and measuring outcomes that are meaningful to patients.
To define the concerns, desires (goals) and expectations of adolescents undergoing surgery for idiopathic scoliosis and to contrast them from their parents and surgeons.
We conducted structured interviews of fifty-five pairs of adolescents and parents separately. The questionnaire had sections on concerns, desires and expectations regarding both scoliosis and surgery, with items pertaining to present and future effects on appearance, pain, physical and psychosocial function and health. Parents also reported what their child’s responses might be. Their surgeons (four) and paediatric spine surgeons (twenty-four) across Canada completed the same questionnaire. Analysis involved repeated measures ANOVA, intra-class correlation coefficients and kappa statistics.
Parents were more concerned than their children about present and future consequences of scoliosis. Surgeons were least concerned. Children, parents and surgeons agreed that improving physical appearance was the primary goal of surgery. Surgeons agreed very little about the natural history of scoliosis, other goals of surgery and the likelihood of specific outcomes. Parents wanted more from surgery than their children. Parents and patients had greater expectations of surgery than surgeons. Adolescents had different priorities from their parents, but parents were aware of this difference and knew what their child’s priorities were.
Adolescents with idiopathic scoliosis, their parents and surgeons have different priorities. This mismatch might stem from uncertainty about the natural history of idiopathic scoliosis for individual patients.
Knowledge of patient priorities is vital for shared decision making, informed consent, understanding patient satisfaction, and for measuring outcomes that matter most to patients.
Funding:
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Orthopaedic Research & Education Foundation: (Unni. G. Narayanan: AAOS/OREF Health Services research Fellowship award)
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Canadian Institutes of Health Research: (James G. Wright, Douglas M. Hedden, Benjamin Alman, Andrew Howard, Sandra Donaldson)
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DePuyAcroMed-Johnson & Johnson Medical Products (James G. Wright, Douglas M. Hedden, Benjamin Alman, Andrew Howard, Sandra Donaldson)
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Synthes, Canada (James G. Wright, Douglas M. Hedden, Benjamin Alman, Andrew Howard, Sandra Donaldson)
Correspondence should be addressed to Cynthia Vezina, Communications Manager, COA, 4150-360 Ste. Catherine St. West, Westmount, QC H3Z 2Y5, Canada
