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Background <p>Adolescent idiopathic scoliosis refers to a complex three-dimensional deformity of the spine, with lifelong physical, psychological and healthcare burden. To improve and help achieve value-based care, this study mapped the integrative patient-centred adolescent idiopathic scoliosis healthcare pathway and investigated potential avenues for improvement from multiple perspectives.</p> Methods <p>Care processes were mapped and evaluated through a brown paper session and focus group with hospital staff, semi-structured interviews with patients and parents, and a brown paper session with scoliosis-specific exercise therapists and orthotists. Data was analysed using reflexive thematic analysis.</p> Results <p>Six themes were identified by staff: reachability, involvement, communication, information provision, organization/coordination and accessibility, while seven themes emerged after the interviews with patients and parents: treatment, information provision, communication, involvement, facilities, organization/coordination and availability. The first brown paper session engaged 42 hospital staff, of whom 12 participated in the focus group. In addition, 31 scoliosis-specific exercise therapists and 2 orthotists contributed to the second brown paper session. Interviews were conducted with 11 patients and 15 parents. Interviewees consistently valued commitment, positive interactions between patients and clinicians, and shared decision making. Key improvement areas included addressing treatment-related burdens, harmonizing patient information, strengthening communication pathways, incorporating peer support and creating standardized protocols to overcome organizational constraints.</p> Conclusion <p>The adolescent idiopathic scoliosis pathway is characterized by professional commitment and high-quality interpersonal care but hampered by treatment burdens, inadequate information provision, communication gaps and organizational inefficiencies. Standardized information provision, enhanced communication lines and the integration of peer support could enhance patient experience and streamline care delivery.</p>

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Mapping and optimization of a patient-centred care pathway for treatment of adolescent idiopathic scoliosis: a qualitative study

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年3月5日

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  • Thomáy-Claire Ayala Hoelen,
  • Ghislaine A.P.G. van Mastrigt,
  • Annemarijn Weber,
  • Zoë Vankan,
  • Linda Klerks,
  • Bram Stevelmans,
  • Selaine F. C. Soons,
  • Aggie T.G. Paulus,
  • Mark van den Boogaart,
  • Eva Jacobs,
  • Paul C. Willems

摘要

Background

Adolescent idiopathic scoliosis refers to a complex three-dimensional deformity of the spine, with lifelong physical, psychological and healthcare burden. To improve and help achieve value-based care, this study mapped the integrative patient-centred adolescent idiopathic scoliosis healthcare pathway and investigated potential avenues for improvement from multiple perspectives.

Methods

Care processes were mapped and evaluated through a brown paper session and focus group with hospital staff, semi-structured interviews with patients and parents, and a brown paper session with scoliosis-specific exercise therapists and orthotists. Data was analysed using reflexive thematic analysis.

Results

Six themes were identified by staff: reachability, involvement, communication, information provision, organization/coordination and accessibility, while seven themes emerged after the interviews with patients and parents: treatment, information provision, communication, involvement, facilities, organization/coordination and availability. The first brown paper session engaged 42 hospital staff, of whom 12 participated in the focus group. In addition, 31 scoliosis-specific exercise therapists and 2 orthotists contributed to the second brown paper session. Interviews were conducted with 11 patients and 15 parents. Interviewees consistently valued commitment, positive interactions between patients and clinicians, and shared decision making. Key improvement areas included addressing treatment-related burdens, harmonizing patient information, strengthening communication pathways, incorporating peer support and creating standardized protocols to overcome organizational constraints.

Conclusion

The adolescent idiopathic scoliosis pathway is characterized by professional commitment and high-quality interpersonal care but hampered by treatment burdens, inadequate information provision, communication gaps and organizational inefficiencies. Standardized information provision, enhanced communication lines and the integration of peer support could enhance patient experience and streamline care delivery.