Illness Representation in Patients with Multiple Sclerosis: A Preliminary Narrative Medicine Study

Overview

Journal Mult Scler J Exp Transl Clin

Date 2024 Sep 27

PMID 39329093

Authors

T Paolucci

M Reho

C Ciacchella

G Veneziani

I Santoro

G Fiorentino

F Galli

C Lai

Affiliations

Soon will be listed here.

Abstract

Background: The development of personalized interventions aimed at coping with multiple sclerosis is enriched by the understanding of patients' representations of the illness.

Objective: The aim of this study was to investigate the association between patients' illness representations versus contextual factors (i.e. presence/absence and type of caregiver, engagement, frequency and type of rehabilitation), fatigue, pain, and neurological impairment.

Methods: Interviews of 28 patients were analysed through an automated text analysis procedure. After a systematic labelling procedure four illness representations were identified: .

Results: Findings showed that the representation of the relational aspects of the illness was associated with the caregiver's presence, while the representation related to coping and growth tended to be associated with participation in rehabilitation programs. Moreover, the representation related to daily life was associated with lower levels of fatigue compared to the representation related to coping and growth, and with higher levels of neurological impairment compared to the representations related to coping and growth and the relational aspects of the illness.

Conclusion: Exploring illness representations is a key step that can help health professionals to get an integrated perspective that could be useful in designing and calibrating interventions according to specific patient needs.

References

Harris C, Barnier A, Sutton J . Consensus collaboration enhances group and individual recall accuracy. Q J Exp Psychol (Hove). 2011; 65(1):179-94. DOI: 10.1080/17470218.2011.608590. View

Bassi M, Cilia S, Falautano M, Grobberio M, Negri L, Niccolai C . The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well-being. Health Soc Care Community. 2019; 28(1):236-246. DOI: 10.1111/hsc.12858. View

Topcu G, Mhizha-Murira J, Griffiths H, Bale C, Drummond A, Fitzsimmons D . Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies. Disabil Rehabil. 2022; 45(5):772-783. PMC: 9928430. DOI: 10.1080/09638288.2022.2046187. View

Sorensen J, Lee A, Lovendahl B, Norgaard M, Bay J, Rasmussen P . Study protocol: to investigate effects of highly specialized rehabilitation for patients with multiple sclerosis. A randomized controlled trial of a personalized, multidisciplinary intervention. BMC Health Serv Res. 2012; 12:306. PMC: 3479000. DOI: 10.1186/1472-6963-12-306. View

Krupp L, Larocca N, Steinberg A . The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol. 1989; 46(10):1121-3. DOI: 10.1001/archneur.1989.00520460115022. View

Thompson A, Banwell B, Barkhof F, Carroll W, Coetzee T, Comi G . Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol. 2017; 17(2):162-173. DOI: 10.1016/S1474-4422(17)30470-2. View

Kargiotis O, Paschali A, Messinis L, Papathanasopoulos P . Quality of life in multiple sclerosis: effects of current treatment options. Int Rev Psychiatry. 2010; 22(1):67-82. DOI: 10.3109/09540261003589521. View

McDonald W, Compston A, Edan G, Goodkin D, Hartung H, Lublin F . Recommended diagnostic criteria for multiple sclerosis: guidelines from the International Panel on the diagnosis of multiple sclerosis. Ann Neurol. 2001; 50(1):121-7. DOI: 10.1002/ana.1032. View

Giovannetti A, Brambilla L, Torri Clerici V, Antozzi C, Mantegazza R, Cerniauskaite M . Difficulties in adjustment to multiple sclerosis: vulnerability and unpredictability of illness in the foreground. Disabil Rehabil. 2016; 39(9):897-903. DOI: 10.3109/09638288.2016.1170212. View

10.

Arida J, Sherwood P, Flannery M, Donovan H . Representational Approach: A Conceptual Framework to Guide Patient Education Research and Practice. Oncol Nurs Forum. 2016; 43(6):781-783. DOI: 10.1188⁄16.ONF.781-783. View

11.

Ghaidar D, Sippel A, Riemann-Lorenz K, Kofahl C, Morrison R, Kleiter I . Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study. BMC Health Serv Res. 2022; 22(1):770. PMC: 9188711. DOI: 10.1186/s12913-022-08150-8. View

12.

Vercoulen J, Hommes O, Swanink C, Jongen P, Fennis J, Galama J . The measurement of fatigue in patients with multiple sclerosis. A multidimensional comparison with patients with chronic fatigue syndrome and healthy subjects. Arch Neurol. 1996; 53(7):642-9. DOI: 10.1001/archneur.1996.00550070080014. View

13.

van der Meide H, Teunissen T, Collard P, Visse M, Visser L . The Mindful Body: A Phenomenology of the Body With Multiple Sclerosis. Qual Health Res. 2018; 28(14):2239-2249. PMC: 6249673. DOI: 10.1177/1049732318796831. View

14.

Forbes A, While A, Taylor M . What people with multiple sclerosis perceive to be important to meeting their needs. J Adv Nurs. 2007; 58(1):11-22. DOI: 10.1111/j.1365-2648.2007.04219.x. View

15.

Pakenham K, Fleming M . Relations between acceptance of multiple sclerosis and positive and negative adjustments. Psychol Health. 2011; 26(10):1292-309. DOI: 10.1080/08870446.2010.517838. View

16.

Huskisson E . Measurement of pain. Lancet. 1974; 2(7889):1127-31. DOI: 10.1016/s0140-6736(74)90884-8. View

17.

von Elm E, Altman D, Egger M, Pocock S, Gotzsche P, Vandenbroucke J . The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement: guidelines for reporting observational studies. Int J Surg. 2014; 12(12):1495-9. DOI: 10.1016/j.ijsu.2014.07.013. View

18.

Corry M, While A . The needs of carers of people with multiple sclerosis: a literature review. Scand J Caring Sci. 2008; 23(3):569-88. DOI: 10.1111/j.1471-6712.2008.00645.x. View

19.

Gottberg K, Einarsson U, Ytterberg C, Fredrikson S, von Koch L, Widen Holmqvist L . Use of health care services and satisfaction with care in people with multiple sclerosis in Stockholm County: a population-based study. Mult Scler. 2008; 14(7):962-71. DOI: 10.1177/1352458508089688. View

20.

Luca M, Eccles F, Perez Algorta G, Patti F . Illness perceptions and outcome in multiple sclerosis: A systematic review of the literature. Mult Scler Relat Disord. 2022; 67:104180. DOI: 10.1016/j.msard.2022.104180. View