Adolescent Idiopathic Scoliosis Care Pathway: Qualitative Data from 101 Participants

Qualitative data mapping the care pathway for adolescent idiopathic scoliosis (AIS) based on input from 101 participants including clinicians, patients, and parents. Collected by Thomay Hoelen and published via DataverseNL, the study identifies 13 distinct themes across clinical and patient perspectives. The data was gathered through brown paper sessions, focus groups, and semi-structured interviews.

Use Cases

• Analyzing 'information provision' themes to design standardized patient education protocols for AIS
• Evaluating 'organization/coordination' feedback to identify bottlenecks in the scoliosis clinical pathway
• Comparing 'communication' gaps between hospital staff and patient/parent interview transcripts

Strengths

• Multi-perspective data from 42 hospital staff and 31 specialized therapists
• Direct patient and parent insights from 26 qualitative interviews
• Thematic analysis covering 13 specific categories like reachability and treatment burden

Limitations

• Small sample size of 11 patients and 15 parents limits generalizability
• Qualitative nature results in unstructured text requiring manual analysis
• Geographic bias likely restricted to the specific clinical setting of the study

Provenance

Source

DataverseNL Harvested Dataverse

Collection Method

Brown paper sessions, focus groups, and semi-structured interviews

Freshness

Last updated March 2026