On the clinical assessment of persistent fatigue and pain (includes people with ME/CFS), 2022, Bernhoff (Thesis)

https://openarchive.ki.se/xmlui/handle/10616/48455

Source: Karolinska Institute Date: January 4 and February 3, 2023 URL: https://openarchive.ki.se/xmlui/handle/10616/48455

https://openarchive.ki.se/xmlui/bitstream/handle/10616/48455/Thesis_Gabriella_Bernhoff.pdf

On the clinical assessment of persistent fatigue and pain
---------------------------------------------------------
Gabriella Bernhoff - Room S213, Zanderska Building, Karolinska Institutet, Flemingsberg, Sweden

Abstract

Patients with persistent fatigue and pain, most of them women, often struggle with decreased function and related concerns. They commonly receive an inconclusive investigation and a delayed diagnosis. Neuropathic aspects of the condition may be missed. Clinical screening is vital because it can support medical and healthcare decision-making early in the course of an illness. Two go-to tools of the typical assessment, the Beighton score and the pain drawing, are appreciated in praxis but lack substantial evidence base. The overarching aim of this thesis was to contribute to improvements in the management and diagnostics for these patients. All research questions originated from clinical praxis.

The studies are based on data from one group among the very large population of patients who have persistent fatigue and pain: those presenting with suspected myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

In study I, the Beighton score was evaluated within clinical routine assessment for its capacity to identify a physique with systemic joint laxity. Systemic joint laxity is a risk factor for developing persistent health issues and should warrant considerations in treatment. Normally, this feature would need to be assessed routinely in the investigation of persistent fatigue or pain. This study involved different competencies of the assessors (physician and physiotherapist). Despite these differences and a lack of joint training in the method, inter-rater reliability was acceptable, demonstrating the stability of the Beighton score as a measurement. The sum score, however, must not be interpreted as a definitive answer regarding whether systemic joint laxity is present but must be read instead within the context of a targeted medical history.

Study II concerned the pain drawing used to assess body pain extent. Methods of interpretation, however, have not been standardized in clinic and little evidence is available regarding its use for assessing the cervical spine. Study II involved evaluation of a method of screening for cervicogenic headache using a standardized reading in which a predefined C2 pain pattern was applied. Dizziness/imbalance was strongly associated with the C2 pain pattern and those who presented with this pattern had more severe pain and lower health-related quality of life compared with those who did not present with it. Thus, the pain drawing with the C2 pain pattern could distinguish patients with a more complex pain picture. The strong association with dizziness/imbalance strengthened the relevance of the pattern in clinical assessment of cervicogenic headache.

Paper III describes self-perceived health in the population with persistent fatigue and pain, from a biopsychosocial perspective. A comparison was made for two subgroups within the study population – those diagnosed with ME/CFS and those who were not but had a related symptom picture. Data were collected with several questionnaires on health-related factors. Characteristics of ME/CFS in this context were impaired tolerance for exertion (mental or physical), impaired energy levels, worse pain, and poorer general health. No between-group differences were found for signs of anxiety and depression, mental role functioning, and mental well-being, so that the identified ME/CFS characteristics did not emerge as causal in the health status of the ME /CFS- subgroup.

In conclusion, the Beighton score and the pain drawing can aid in determining the nature and degree of a condition with persistent fatigue and pain. They appear to be tools to retain in the clinical assessment. Screening with the pain drawing also may be beneficial in supporting a patient-centred management and merits further development within the clinical assessment. The experience patients have with ME/CFS places this condition at the far end of the spectrum of persistent fatigue and pain.

 

List of scientific papers

This thesis is based on studies reported in the following papers, referred to in the text by their respective roman numerals.

I. Assessment of systemic joint laxity in the clinical context: relevance and replicability of the Beighton score in chronic fatigue. Bernhoff G, Huhmar H, Bunketorp Käll L. J Back Musculoskelet Rehabil. 2022; 35: 859–866.

II. The significance of pain drawing as a screening tool for cervicogenic headache and associated symptoms in chronic fatigue. Bernhoff G, Huhmar HM, Rasmussen-Barr E, Bunketorp Käll L. J Pain Res. 2022; 15: 2547–2556.

III. A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: a cross-sectional exploratory study. Bernhoff G, Rasmussen Barr E, Bunketorp Käll L. J Transl Med 20, 577 (2022).

 

I haven't yet worked out what pain drawing is! I did a quick internet search but struggling with a misbehaving mouse...