Collecting patient-reported data among patients with major lower extremity amputation

AIM: To evaluate two methods for collecting patient-reported outcomes (PROs) after major lower extremity amputation (MLEA): digital distribution via e-Boks and postal mail. The evaluation compared response rates, respondent characteristics, distribution costs, and explored patient-perceived barriers to responding.

METHODS: A mixed-methods study nested within the Danish Amputation Database (DanAmp). Quantitative data on response rates and patient characteristics at 3- and 6-month follow-up were analyzed descriptively, with between-group comparisons using appropriate statistical tests. Costs were calculated per questionnaire from a distribution perspective. Semi-structured telephone interviews with a subsample of non-respondents were analyzed using content analysis.

RESULTS: Of 263 consenting patients, 78% received questionnaires via e-Boks and 22% by postal mail. Overall response rates were 62% at 3 months and 61% at 6 months. Digital distribution achieved higher response rates than postal mail at both 3 months (67% vs. 39%) and 6 months (67% vs. 36%). Complete responses were more frequent in the digital group. Responders were younger and had better mobility than non-responders, indicating potential underrepresentation of frailer individuals. Digital distribution was markedly more cost-efficient compared with postal mail. Interviews identified four main barriers: perceived relevance, questionnaire format, life disruption following amputation, and limited competencies.

CONCLUSION: Digital PRO distribution via e-Boks is feasible, cost-efficient, and yields higher response rates than postal mail following MLEA. However, multimodal strategies are recommended to ensure representativeness and equitable inclusion of digitally excluded patients.