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Table 1 Surgical questions

From: Hand surgery and hand therapy clinical practice guideline for epidermolysis bullosa

Population

Intervention

Outcome

1. Does surgery improve hand function?

RDEB

Age?

Stage of deformity

Thumb release

Whole hand release

Finger contracture release

Finger web space release

Wrist release

Bilateral vs unilateral amputation

Validated patient rated outcome

Measures

Subjective function

Satisfaction

Recurrence/timing

Pain

Independence

2. Does patient selection/preparation influence outcomes of hand surgery?

RDEB

Assessment of: age, previous surgery/results

Ability to participate in decision-making

Microbiology

Expectations/education

Psychological preparedness

MDT assessment for associated procedures Medical status (e.g. hemoglobin)

Classification/X-rays

Family resource assessment

Functional assessment/photographs

Geography/suspected adherence

Validated patient rated outcome

Measures

Subjective function

Satisfaction

Recurrence/timing

Pain

Independence

Sensibility

3. Do specific surgical techniques/resources influence safety/outcomes of hand surgery?

RDEB

Surgeon experience/surgical equipment

Specialist center

Intra-op EB nurse support

Specialist anesthesia/type of anesthesia

Tourniquet

Skin graft (type?)/skin substitutes

Dressing products/type

Splints (plaster/other) pins

Antibiotics

Bone/joint management

Cellular therapy

Validated patient rated outcome

Measures

Subjective function

Satisfaction

Recurrence/timing

Pain

Independence

Skin injury

Anaesthetic complications