Pain and spina bifida: common, severe and worse with age. Konrad Szymanski, Rosalia Misseri, Mark Cain, Adam T. Hirsh

Transcription

1 Pain and spina bifida: common, severe and worse with age Konrad Szymanski, Rosalia Misseri, Mark Cain, Adam T. Hirsh

2 No disclosures

3 Pain in spina bifida Pain is an important clinical outcome Associated with many other outcomes, including lower quality of life May be common in people with spina bifida (SB)

4 Problems with the literature (few exceptions) Studies tend to be small (institutional, national) Populations include more than just SB Predominantly adults No stratification based on age No reference populations (controls) No analysis of magnitude of pain No analysis of impact of pain Bellin et al., Verhoef et al., Werhagen et al., Engel et al Wood et al., Crytzer et al., Wagener et al., 2015.

5 The goal To assess pain the in the SB population: - Prevalence - Severity - Impact on everyday activities

6 Methods International cross-sectional study Patients +8yo with SB (clinic and online) Exclusion: - DD interfering in question comprehension - Recent surgery (<1 month) - Poor English language proficiency - Incomplete questionnaire Controls without SB (peds clinic and online)

7 Methods International cross-sectional study Online and paper questionnaire Embedded in QUALAS quality of life study

8 Pain Assessment Wong-Baker Faces scale How much pain did you have in the last 4 weeks? - Prevalence (no pain vs. any), severity

9 Pain Assessment Impact on everyday activities In the last 4 weeks, did pain stop you from doing what you wanted to do? 0 Never / I did not have pain 25 Almost never 50 Sometimes 75 Almost always 100 Always

10 Analysis Fisher s exact tests T-tests Pearson s correlation (r) Logistic regression (prevalence) Linear regression (severity) p=0.05 considered significant SAS v9.4

11 Population characteristics SB (n=800) Controls (n=225) Mean age 23.6 years 24.0 years p=0.76 Children 44.5% 44.0% p=0.81 Male 41.4% 41.8% p=0.80 VP shunted 67.3% Community 52.6% ambulators

12 Population characteristics SB (n=800) Controls (n=225) Mean age 23.6 years 24.0 years p=0.76 Children 44.5% 44.0% p=0.81 Male 41.4% 41.8% p=0.80 VP shunted 67.3% Community 52.6% ambulators

13 Population characteristics SB (n=800) Controls (n=225) Mean age 23.6 years 23.6 years p=0.95 Children 44.5% 49.8% p=0.17 Male 41.4% 40.0% p=0.76 VP shunted 67.3% Community 52.6% ambulators

14 Population characteristics SB (n=800) Controls (n=225) Live outside 16.5% 19.6% p=0.17 United States

15 Who has pain? SB (n=800) Controls (n=225) Any pain 64.6% 19.6% p<0.0001

16 Pain prevalence vs. age (n=800) SB Control

17 Pain prevalence vs. age (n=800) SB Control Pain more common in SB group (p<0.0001)

18 Pain prevalence vs. age (n=800) SB Control SB group Pain increases with age (p<0.0001, R=0.16)

19 Pain prevalence vs. age (n=800) 61.7% 58.5% 52.7% 72.7% 82.3% 90.3% SB Control SB group Pain increases with age (p<0.0001, R=0.16)

20 Pain prevalence vs. age (n=800) SB Control Controls Pain does not increase with age (p=0.17)

21 Predictors of any pain in SB Multivariate analysis Age >25 years old Female gender Developmental delay No shunt p=0.04 p=0.01 p=0.01 p=0.001 * corrected for: age, gender, race, clinic vs. online participation, country, ambulatory status, developmental delay, shunt status, living with caregiver, independent activates of daily living

22 Pain severity (n=517) SB Controls If had pain: Mean pain p= score

23 Pain severity (n=517) SB Control % prevalence

24 Pain severity (n=517) SB Control % prevalence Higher pain scores in SB group (p=0.02)

25 Pain impact So what? Did pain stop you from doing what you wanted to do?

26 Pain impact (n=517) SB Control

27 Pain impact (n=517) SB Control Higher pain score = higher impact (p<0.0001)

28 Pain impact (n=517) SB Control Higher pain score = higher impact (p<0.0001) in both groups (p=0.65)

29 Predictors of pain impact in SB (if you have pain) Multivariate analysis Higher pain scores Non-white race Developmental delay p< p=0.02 p=0.003 * corrected for: age, gender, race, clinic vs. online participation, country, ambulatory status, developmental delay, shunt status, living with caregiver, independent activates of daily living

30 Predictors of pain impact in SB (if you have pain) Multivariate analysis Higher pain scores p< Non-white race p=0.02 Developmental delay p=0.003 Almost exact same results when we asked * corrected 118 for: caregivers age, gender, race, (mostly clinic vs. online mothers) participation, about country, the ambulatory status, impact developmental of pain delay, on shunt their status, living childwith caregiver, independent activates of daily living

31 Discussion Large, heterogeneous, international population encompassing different ages Generalizable? Looked at more than if pain was present Severity Impact Age

32 Limitations Chronic vs. acute pain Where and why does it hurt? Treatments not assessed No longitudinal follow-up I m just a urologist

33 Conclusions: We should ask about pain! Pain affects majority of people with SB Prevalence increases through adulthood People with SB experience more severe pain than those without SB More research is needed to improve their care

34 Thank you