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01.12.2017 | Research article | Ausgabe 1/2017 Open Access

BMC Family Practice 1/2017

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

Zeitschrift:
BMC Family Practice > Ausgabe 1/2017
Autoren:
Eva Stormorken, Leonard A. Jason, Marit Kirkevold
Wichtige Hinweise

Electronic supplementary material

The online version of this article (doi:10.​1186/​s12875-017-0614-4) contains supplementary material, which is available to authorized users.

Abstract

Background

Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities.

Methods

A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis.

Results

All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities.

Conclusions

The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.
Zusatzmaterial
Additional file 1: Signs and symptoms. (PDF 31 kb)
12875_2017_614_MOESM1_ESM.pdf
Additional file 2: Bell’s Disability Scale. (PDF 62 kb)
12875_2017_614_MOESM2_ESM.pdf
Additional file 3: The interview guide. (XML 237 kb)
12875_2017_614_MOESM3_ESM.xml
Literatur
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