Abstract
PurposeTo describe Norwegian adults with congenital unilateral upper limb deficiency (CUULD) regarding self-reported chronic pain (intensity, locations, impact on daily life) and fatigue. Analyze associations between chronic pain and demographic/clinical factors and associations between fatigue and demographic/ clinical factors.Materials and methodsCross-sectional study. In 2012, a postal questionnaire was sent to 186 persons with congenital limb deficiency, age ≥ 20 years. Seventy seven persons with CUULD responded and are included in this paper. The questionnaire included questions on demographic and clinical factors, chronic pain (Brief Pain Inventory, Standardized Nordic Questionnaire) and fatigue (Fatigue severity scale (FSS)).ResultsMean age was 42.7 (SD 16.0), 71% were women. Sixty tree % reported chronic pain, many had bilateral pain, most common pain locations were neck (78%) and shoulder/upper arm (78%). However, reported mean pain intensity (3.3 (SD 2.8)) and mean number of pain locations (3.0 (SD 2.5)) were moderate to low. Thirty seven persons reported that pain started in adult age (≥ 19 years). One third reported severe fatigue (FSS ≥ 5). Persons reporting cold sensitivity and severe fatigue were most likely to have chronic pain.ConclusionsCongenital upper limb deficiency increases the risk of self-reported pain in neck, shoulder/upper arm, cold sensitivity and severe fatigue. Pain, fatigue and cold sensitivity may individually affect function, and may together reinforce functional problems. This should be to taken into account when rehabilitation programs are developed. Further studies of more representative samples should be conducted to confirm our findings.
Highlights
This paper presents data on chronic pain and fatigue in adults with congenital unilateral upper limb deficiency (CUULD) in Norway
Congenital upper limb deficiency increases the risk of self-reported pain in neck, shoulder/ upper arm, cold sensitivity and severe fatigue
Of 186 available persons with congenital limb deficiency (CLD), 97 persons filled in the questionnaires, yielding a 52.2% response rate in the original CLD study [1]
Summary
This paper presents data on chronic pain and fatigue in adults with congenital unilateral upper limb deficiency (CUULD) in Norway. CUULD is the most frequent CLD, and is twice as common as lower limb deficiency [3, 4]. In Norway, the ISO/ISPO classification of congenital limb deficiency is most frequently used [6]. In this classification, CLD‘s are divided into transverse and longitudinal defects. In transverse CLD‘s, all structures distal to a specific point of the limb are lacking. In longitudinal CLD‘s, a bone or several bones are lacking partially or completely parallel to the long axis of the limb. In addition to the lacking parts of the limb, blood vessels, nerves and other structures in the remaining part of the limb may be affected [7]
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