Pain & health status in adults with myelomeningocele living in southern Sweden 3 rd World Congress on Spina Bifida Research & Care San Diego, CA March 18, 2017 CSD syd Ann Alriksson-Schmidt, PhD, MSPH Annika Lundkvist-Josenby, PhD Barbro Lindquist, PhD Lena Westbom, MD, PhD MMCUP
March 18, 2017 Pain & health status in adults with myelomeningocele living in southern Sweden Ann Alriksson-Schmidt, PhD, MSPH Skåne University Hospital, Lund University, Sweden Does not intend to discuss commercial products or services Does not intend to discuss non-fda approved uses of products/providers of services.
Background Persons with spina bifida/mmc are at risk for pain musculoskeletal deformities, shunt dysfunction, urinary tract infections and/or stones, bowel problems, tethered cord, syringomyelia, spinal root or nerve compressions, suboptimal positioning, post-surgery pain, wear and tear,
Background cont d Lack of research on pain in adults with SB/MMC SB & hydrocephalus (16-25 yoa) reported significantly worse scores on bodily pain (head, neck, and back) than typically developing peers (Verhoef et al, 2007). 90% of the participants (18-68 yoa) with SB reported pain- vast majority stated that the pain affected their lives somewhat to greatly (Wagner et al, 2015). Pain in young adults with SB (primarily MMC, 18-25 yoa) associated with reduced physical- and psychological health T1-T2. (Bellin et al, 2013). Adults with MMC (18-50+ yoa), 29% reported pain (19% = nociceptive pain, 10% = neuropathic pain) (Werhagen et al, 2013).
Specific Aims To investigate the: 1.prevalence of self-reported pain, impact, severity, & location of pain in relation to gender, age, and muscle function level, 2.self-reported health status in relation to gender, age, and muscle function level.
Methods Pilot study on health, medical status, physical function, & social situation to determine healthcare need for this population Focus on pain & health Assessments lasted approximately 3 hrs Semi-structured interviews & medical records review General questionnaire Urology questionnaire Brief health-related QoL questionnaire (EQ-5D-L) Motor/function questionnaire
Methods cont d Catchment area: Adults (19-75 years) with MMC in 4 Swedish healthcare regions N = 190 10 deceased, 19 moved out of region, 2 not possible to locate N = 159 51 participants recruited
Methods- Measures cont d Pain items: Did you experience pain in the past 4 weeks? During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? During the past 4 weeks how much did pain interfere with sleep? not at all, a little bit, moderately, quite a bit, extremely
Methods- Measures cont d Pain severity (EQ5D-5L) best describes your health TODAY - Pain/Discomfort I have no pain or discomfort I have slight pain or discomfort I have moderate pain or discomfort I have severe pain or discomfort I have extreme pain or discomfort Pain sites (11 sites) Head, Neck, Back, Chest, Abdomen, Shoulders, Arms/hands, Hips, Thighs/knees, Lower leg/feet, Other
Methods- Measures cont d Health Items How good or bad is your health today? Visual analogue scale from EQ5D-5L (0-100) Muscle Function Level Classification system for neurological level of lesion, based on the strength of different muscle groups (Bartonek et al 1999) I. Sacral II. Low lumbar III. Middle lumbar IV. High lumbar V. High lumbar/thoracic Primarily descriptive analyses performed
Results- Sample characteristics N = 51 adults with confirmed diagnosis of MMC 53% = males Median age = 29 years (range 19-56 years) 80% shunted hydrocephalus 11 were walkers, 38 had & used wheelchair (most had both manual & electric)
Results cont d- Sample characteristics 12 11 11 # of Participants 10 8 6 4 8 9 8 4 2 0 I. Sacral II. Low lumbar III. Middle lumbar IV. High lumbar V. High lumbar/thoracic Muscle Function Level* (I-V) N = 51 Unknown/missing *Bartonek et al, 1999, DMCN
Results cont d- Pain prevalence Pain prevalence (past 4 weeks) 72% (n = 37) reported having experienced pain, 22% (n = 11) did not, 6% (n = 3) missing. No statistically signficant differences based on gender or age
Results cont d- Pain intereference work # of participants 25 20 15 10 5 During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? n = 41 0 "Not at all" "A little" "Somewhat" "A lot" "Very much" Response categories
Results cont d- Pain intereference sleep # of participants 30 25 20 15 10 During the past 4 weeks how much did pain interfere with sleep? 5 0 "Not at all" "A little" "Somewhat" "A lot" "Very much" Response categories
Results cont d Pain severity (today) Overall, 29% reported no pain today, 26% reported slight pain, 31% reported moderate pain, and 2% reported severe pain. No statistically signficant differences based on gender or age
Results- Pain severity (today) 12 Pain severity today X Muscle Function Level # of participants 10 8 6 4 2 0 I. Sacral II. Low lumbar III. Middle lumbar IV. High lumbar High lumbar/thoracic Missing MFL No pain Slight pain Moderate pain Severe pain Extreme pain
Results cont d- Where does it hurt? Median number of pain site/s was 1 (40%), range 0-9 Number of pain sites did not differ based on gender or age
Results cont d -Where does it hurt? Muscle function level I. Sacral (n = 11 ) II. Low lumbar (n = 8) III. Middle lumbar (n = 9) IV. High lumbar (n = 8 ) V. High lumbar/t horacic (n = 11 ) Unknown (n = 4 ) Total (n = 51 ) Head Neck Back Chest Stomach Shoulders Arms/han ds Hips Thighs/kn ee Lower leg/feet 1 2 5 1 2 1 1 13 2 2 3 1 4 1 3 16 Other 3 1 2 1 2 9 1 2 3 1 1 4 2 2 1 1 18 2 4 1 4 2 1 14 1 1 1 1 1 5 7 11 16 1 3 14 4 7 7 4 1 Total
Results- Self-reported health (VAS scale 0-100) Indicate how your health is TODAY: 100 means the best health you can imagine 0 means the worst health you can imagine Results from ANOVA showed significant main effects for gender and age F(2, 44) = 5.63, p =.007, adjusted R 2 =.17. Overall mean = 70.90 (SD = 20.91), (range 10-100) Women reported statistically significantly lower mean scores (mean = 63.58) than did men (mean = 76.33) on health Older persons reported significantly lower current health scores than did younger (B = - 89, t = -2.79, p =.008).
Results cont d- Self-reported health
Discussion The majority of participants (72%) reported pain in the past 4 weeks In most cases the pain did not interefere with work or sleep, Did not differ based on age or gender 29% did not have pain at the time of assessment 71% did have pain (31% moderate pain) Most reported pain in one particular site 1. Back 2. Shoulders 3. Neck
Discussion cont d Women scored lower on self-reported health (today) as did older participants Limitations Small sample size limited # of analyses Is it generalizable? Next steps? Implement on larger scale in MMCUP- larger sample size, better generalizability Better support (or not) for current findings, can also study health disparities based on geographical region.
Thank You! Questions?
Table 2. Level of muscle function Level I Sacral Lowlesion II Low lumbar III Middle lumbar Muscle Function Level* Description of function Weakness of intrinsic foot muscles. Good-to-normal foot plantarflexion. Fair or less foot plantarflexion, fair or better knee flexion, poor to fair or better hip extension and/or hip abduction Good-to-normal hip flexion and knee extension, fair or less knee flexion, trace of hip extension, hip abduction and below-knee muscles. No knee extension activity, poor or less hip flexion, fair or good pelvic elevation IV High lumbar Highlesion V Thoracic No muscle activity in the lower limbs, no pelvic elevation *Based on the work of Bartonek et al, 1999 and 2001.