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Table 2 HSP sample compared to controls: Overview of main results

From: Health survey of adults with hereditary spastic paraparesis compared to population study controls

Main finding HSP sample

HSP sample compared to controls

Overall life satisfaction

M = 3.6 (SD = 1.2, range 1 to 7)a

HSP sample poorer (χ 2 (1) = 210.20, p < .001).

Mental wellbeing

M = 11.4 (SD = 3.3, range 6 to 21)

HSP scored lower than controls on 5 of 6 items (χ 2 (1) range 13.38 to 65.95, all p < .001).

Memory

M = 15.2 (SD = 4.0, range 9 to 27)

HSP more frequently reported problems on 6 of 9 items (χ 2 (1) range 4.21 to 26.306, all p < .05)

Sleep

Percentage of participants who rated several times a week: daytime drowsiness: 35 %; frequent night awakenings 36 %; trouble falling asleep 28 %; waking up early 19 %.

HSP reported more sleep problems on all items (χ 2 (1) range 6.39 to 59.26, all p < .05).

Pain

70 participants (64.8 %) confirmed chronic pain of >3 months duration in the past year. Most frequent pain sites: feet, knees, lower back, and hips.

HSP confirmed more frequent musculoskeletal pain (χ 2 (1) = 6.51, p < .05). HSP confirmed more frequent pain in the lower body pain sites (χ 2 (1) range 5.067 to 61.636, all p < .05). Controls more frequent pain in the upper body pain sites (χ 2 (1) range 7.817 to 26.141, all p < .05).

Comorbid disease prevalence

Most frequently reported diseases were mental health problems 19 %; osteoarthritis 14 %; hand eczema 11 %; psoriasis 10 %; asthma 8 %; and brain hemorrhage 7 %.

HSP more frequently reported brain hemorrhage (χ 2 (1) = 5.284, p < .05) and psoriasis (χ 2 (1) = 4.324, p < .05).

Gastrointestinal problems

Percentage of participants who reported much problems: constipation 14 %; alternating constipation and diarrhea 7 %; bloating 7 %; heartburn 6 %; diarrhea; and nausea 0 %. 11 % confirmed fecal incontinence weekly or daily.

HSP more frequently reported much problems on alternating constipation and diarrhea (χ 2 (1) = 9.163, p < .05) and constipation (χ 2 (1) = 11.032, p < .05). HSP more frequently reported fecal incontinence (χ 2 (1) = 26.253, p < .001).

Urinary problems

52 % confirmed urinary incontinence

HSP more frequently reported urinary incontinence (χ 2 (1) = 5.427, p < .05)

Oral health

67 % rated their oral health as good or very good, while 13 % rated their oral health as poor or very poor.

No difference, but HSP reported more frequent dental visits during the last year compared to controls (χ 2 (1) = 4.466, p < .05).

Physical activity

Reported frequency of physical activity: daily 18 %; 2–3 times pr. week 33 %; once a week 22 %; less than once a week 14 %; and never 11 %.b

No difference in frequency. HSP spent more hours sitting daily compared to controls (MHSP = 9.0 vs. Mcontrols = 5.7, effect size difference d = 1.18).

Medication use

Percentage of participants who reported taking nonprescription medicines 1–3 times weekly: for general pain 31 %; for constipation 17 %; for headache 16 %; and for heartburn 10 %.c

HSP more frequently reported taking medication for constipation (χ 2 (1) = 30.685, p < .001) and general pain (χ 2 (1) = 4.068, p < .05). Otherwise no difference.

Alcohol and tobacco use

Percentage of participants who reported drinking alcohol at least 2–3 times pr. week 20 %, never drinking alcohol 11 %, smoking daily 11 %.

No difference.

Social support

Percentage of participants who confirmed practical support 82 % and emotional support 80 %d

HSP reported lower practical support (χ 2 (1) = 36.07, p < .001) and lower emotional support (χ 2 (1) = 13.59, p < .001).

  1. Note. M mean, SD standard deviation. No age or gender difference unless indicated. a = males reported higher impact than females. b = older participants spent more hours sitting daily. c = older participants took more laxatives. d = older participants reported lower emotional support