Separating emotions from consequences in muscle disease: Comparing beneficial and unhelpful illness schemata to inform intervention development
Abstract
Objective Muscle diseases are currently untreatable and people with muscle disease experience reduced quality of life (QoL) and low mood. Patient's illness perceptions explain large proportions of the variance in QoL and mood, even after considering the impact of disease severity. Therefore a psychological intervention which helps patients modify their illness perceptions may improve QoL and mood even as the disease progresses. However, it is unknown which profile of illness perceptions (illness schema) an intervention should seek to promote. We aimed to fully describe and compare the illness schemata of clusters associated with better and worse outcomes.Method Following a cluster analysis of 217 people with muscle disease, a between-cluster comparison of QoL and mood identified the clusters associated with better and worse outcomes. Functional impairment was compared between-clusters to indicate if this could account for observed differences. Inter-correlations between the illness perceptions held within each cluster were examined across the clusters.Results Three stable clusters holding distinct illness schemata emerged. One cluster was characterised by greater functional impairment, worse QoL and mood than the other two clusters. The other two clusters did not differ in functional impairment but differed significantly in QoL and mood. The cluster associated with better outcomes was characterised by realistic views of timeline, greater coherence, reduced emotional representation and identity, and a lack of association between emotional representation and consequences.Conclusion Detailed comparison of beneficial and unhelpful illness schemata, taking into account disease-specific concerns, can help inform both the content and composition of an intervention.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Psychological variables such as illness beliefs, coping methods and psychological flexibility account for variance in quality of life in muscle disease.
“Psychological variables such as illness beliefs,6 8 coping methods9–11 and psychological flexibility12 have been shown to account for variance in QoL.”
There is considerable variation in QoL and mood between people with MD.
“there is considerable variation in QoL and mood between people with MD (Graham, Rose, Hankins, Chalder, & Weinman, 2013)”
From A pilot case series of a brief acceptance and commitment therapy (ACT)-based guided self-help intervention for improving quality of life and mood in muscle disorders (2017) · cites this paper as Graham, Rose, Hankins, Chalder, & Weinman, 2013
Some people with MD experience excellent QoL and mood even with high levels of disease severity.
“some do experience excellent QoL and mood, even with high levels of disease severity.”
From A pilot case series of a brief acceptance and commitment therapy (ACT)-based guided self-help intervention for improving quality of life and mood in muscle disorders (2017) · cites this paper as Graham, Rose, Hankins, Chalder, & Weinman, 2013
There is evidence that ACT processes such as psychological flexibility predict functioning and quality of life in MND and other progressive, incurable and/or life-limiting conditions, including muscle disorders, Duchenne muscular dystrophy and palliative care populations.
“there is evidence that ACT processes such as psychological flexibility predict functioning and quality of life in MND [25] and other progressive, incurable and/or life-limiting conditions, including muscle disorders [26–28], Duchenne muscular dystrophy [29] and palliative care populations [30].”
Cites
The Hospital Anxiety and Depression Scale
Zigmond, A. S., & Snaith, R. P. (1983) · Acta Psychiatrica Scandinavica · doi:10.1111/j.1600-0447.1983.tb09716.x · Cited by 47,139 · see citing works
Man's search for meaning; an introduction to logotherapy
FRANKL, V. E. (1971) · Medical Entomology and Zoology · Cited by 3,182 · see citing works
The revised illness perception questionnaire (IPQ-R)
Moss-Morris, R., Weinman, J., Petrie, K., Horne, R., Cameron, L., & Buick, D. (2002) · Psychology & Health · doi:10.1080/08870440290001494 · Cited by 2,949 · see citing works
Self-citationIntegrating response shift into health-related quality of life research: a theoretical model
Sprangers, M. A. G., & Schwartz, C. E. (1999) · Social Science & Medicine · doi:10.1016/s0277-9536(99)00045-3 · Cited by 2,228 · cited 1× · see citing works
“This buffer could be explained in several ways, for example, those in cluster 2 (beneficial cluster) may have (a) assessed the attainability of previous goals, and thus reset these goals tomake themmore achievable and less frustrating, given that they now have an illness which will seriously restrict their functioning…”
BackgroundA Meta-Analytic Review of the Common-Sense Model of Illness Representations
Hagger, M. S., & Orbell, S. (2003) · Psychology & Health · doi:10.1080/088704403100081321 · Cited by 1,607 · see citing works
Handbook of Psychology and Health
Gatchel, R. J., Baum, A. E., & Singer, J. E. (2021) · Routledge eBooks · doi:10.4324/9781003161530 · Cited by 1,321 · see citing works
The dimensions of health outcomes: the health assessment questionnaire, disability and pain scales.
Fries, J. F., Spitz, P. W., & Young, D. Y. (1982) · PubMed · Cited by 1,312 · see citing works
MS quality of life, depression, and fatigue improve after mindfulness training: A randomized trial
Grossman, P., Kappos, L., Gensicke, H., D'Souza, M., Mohr, D. C., Penner, I. K., & Steiner, C. (2010) · Neurology · doi:10.1212/wnl.0b013e3181f4d80d · Cited by 419 · cited 1× · see citing works
“Acceptance is a feature of several theory-based intervention models, including cognitive behavioural therapy (CBT) [26], a variant of CBT, with a particular emphasis on acceptance [27], called acceptance and commitment therapy (ACT) [28] and mindfulness (MBCT/MBSR) [29].”
BackgroundBroadbent, E., Ellis, C. J., Thomas, J., Gamble, G., & Petrie, K. J. (2009) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2008.12.001 · Cited by 397 · see citing works
Petrie, K. J., Perry, K., Broadbent, E., & Weinman, J. (2012) · British Journal of Health Psychology · doi:10.1111/j.2044-8287.2011.02033.x · Cited by 330 · see citing works
Self-citationPatients’ Perceptions of Their Illness
Petrie, K. J., & Weinman, J. A. (2012) · Current Directions in Psychological Science · doi:10.1177/0963721411429456 · Cited by 246 · see citing works
Self-citationConstruction and validation of a quality of life questionnaire for neuromuscular disease (INQoL)
Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., & Rose, M. R. (2007) · Neurology · doi:10.1212/01.wnl.0000257819.47628.41 · Cited by 168 · see citing works
Self-citationForman, E. M., Chapman, J. E., Herbert, J. D., Goetter, E. M., Yuen, E. K., & Moitra, E. (2012) · Behavior Therapy · doi:10.1016/j.beth.2011.07.004 · Cited by 151 · cited 1× · see citing works
“Acceptance is a feature of several theory-based intervention models, including cognitive behavioural therapy (CBT) [26], a variant of CBT, with a particular emphasis on acceptance [27], called acceptance and commitment therapy (ACT) [28] and mindfulness (MBCT/MBSR) [29].”
BackgroundQuality of life and measures of quality of life in patients with neuromuscular disorders
Burns, T. M., Graham, C. D., Rose, M. R., & Simmons, Z. (2012) · Muscle & Nerve · doi:10.1002/mus.23245 · Cited by 132 · see citing works
Self-citationA systematic review of quality of life in adults with muscle disease
Graham, C. D., Rose, M. R., Grunfeld, E. A., Kyle, S. D., & Weinman, J. (2011) · Journal of Neurology · doi:10.1007/s00415-011-6062-5 · Cited by 104 · see citing works
Self-citationMcCorry, N., Dempster, M., Quinn, J., Hogg, A., Newell, J., Moore, M., Kelly, S., & Kirk, S. (2012) · Psycho-Oncology · doi:10.1002/pon.3054 · Cited by 97 · see citing works
Clatworthy, J., Hankins, M., Buick, D., Weinman, J., & Horne, R. (2007) · Psychology & Health · doi:10.1080/14768320600774496 · Cited by 92 · see citing works
Self-citationDempster, M., McCorry, N., Brennan, E., Donnelly, M., Murray, L., & Johnston, B. T. (2011) · Journal of Health Psychology · doi:10.1177/1359105310386633 · Cited by 84 · see citing works
Kaptein, A. A., Bijsterbosch, J., Scharloo, M., Hampson, S. E., Kroon, H. M. J. A., & Kloppenburg, M. (2010) · Health Psychology · doi:10.1037/a0017787 · Cited by 74 · see citing works
Role of disease severity, illness perceptions, and mood on quality of life in muscle disease
Rose, M. R., Sadjadi, R., Weinman, J., Akhtar, T., Pandya, S., Kissel, J. T., Jackson, C. E., & the Muscle Study Group (2012) · Muscle & Nerve · doi:10.1002/mus.23320 · Cited by 73 · see citing works
Self-citationIllness Perception in Patients with Differentiated Epithelial Cell Thyroid Cancer
Hirsch, D., Ginat, M., Levy, S., Benbassat, C. A., Weinstein, R., Tsvetov, G., Singer, J., Shraga-Slutzky, I., Grozinsky‐Glasberg, S., Mansiterski, Y., et al. (2009) · Thyroid · doi:10.1089/thy.2008.0360 · Cited by 66 · see citing works
The role of acceptance in chronic fatigue syndrome
Brooks, S. K., Rimes, K. A., & Chalder, T. (2011) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2011.08.001 · Cited by 65 · see citing works
Self-citationItalian validation of INQoL, a quality of life questionnaire for adults with muscle diseases
Sansone, V. A., Panzeri, M., Montanari, M., Apolone, G., Gandossini, S., Rose, M. R., Politano, L., Solimene, C., Siciliano, G., Volpi, L., et al. (2010) · European Journal of Neurology · doi:10.1111/j.1468-1331.2010.02992.x · Cited by 64 · see citing works
Self-citationDepression in Myotonic Dystrophy type 1: clinical and neuronal correlates
Winblad, S., Jensen, C., Månsson, J., Samuelsson, L., & Lindberg, C. (2010) · Behavioral and Brain Functions · doi:10.1186/1744-9081-6-25 · Cited by 57 · see citing works
What determines quality of life in inclusion body myositis?
Sadjadi, R., Rose, M. R., & Muscle Study Group (2010) · Journal of Neurology, Neurosurgery & Psychiatry · doi:10.1136/jnnp.2009.183863 · Cited by 54 · see citing works
Self-citationMols, F., Denollet, J., Kaptein, A. A., Reemst, P. H. M., & Thong, M. S. Y. (2012) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2012.07.004 · Cited by 53 · see citing works
Skinner, T. C., Carey, M. E., Cradock, S., Dallosso, H. M., Daly, H., Davies, M. J., Doherty, Y., Heller, S., Khunti, K., Oliver, L., et al. (2011) · Psychology & Health · doi:10.1080/08870440903411039 · Cited by 47 · see citing works
Structure and Determinants of Illness Representations in Chronic Disease
Heijmans, M., & de Ridder, D. T. D. (1998) · Journal of Health Psychology · doi:10.1177/135910539800300406 · Cited by 35 · see citing works
Becker and limb‐girdle muscular dystrophies: A psychiatric and intellectual level comparative study
Melo, M., Lauriano, V., Gentil, V., Eggers, S., Bianco, S. S. D., Gimenez, P. R., Akiyama, J., Okabaiashi, H., Frota‐Pessoa, O., Passos‐Bueno, M. R., et al. (1995) · American Journal of Medical Genetics · doi:10.1002/ajmg.1320600107 · Cited by 22 · see citing works
Lowe, R., Porter, A. M., Snooks, H. A., Button, L. A., & Evans, B. A. (2011) · British Journal of Health Psychology · doi:10.1111/j.2044-8287.2011.02023.x · Cited by 19 · see citing works
Flagged first, then by citations
1 of the 31 references couldn’t be matched to a known paper.
Cited by
Sorted by citations
Graham, C. D., Gouick, J., Krahé, C., & Gillanders, D. (2016) · Clinical Psychology Review · doi:10.1016/j.cpr.2016.04.009 · Cited by 476 · see citing works
Self-citationHarrison, S. L., Robertson, N., Graham, C. D., Williams, J., Steiner, M. C., Morgan, M. D. L., & Singh, S. J. (2014) · Respiratory Medicine · doi:10.1016/j.rmed.2013.10.016 · Cited by 77 · see citing works
Self-citationChen, D., Guo, X., Zheng, Z., Wei, Q., Song, W., Cao, B., Huang, R., Yang, R., & Shang, H. (2014) · Muscle & Nerve · doi:10.1002/mus.24325 · Cited by 58 · see citing works
A systematic review of illness representation clusters in chronic conditions
Rivera, E., Corte, C. M., DeVon, H. A., Collins, E. G., & Steffen, A. D. (2020) · Research in Nursing & Health · doi:10.1002/nur.22013 · Cited by 56 · see citing works
Graham, C. D., Gillanders, D., Stuart, S., & Gouick, J. (2015) · Clinical Case Studies · doi:10.1177/1534650114539386 · Cited by 43 · see citing works
Self-citationGraham, C. D., Simmons, Z., Stuart, S. R., & Rose, M. R. (2015) · Muscle & Nerve · doi:10.1002/mus.24487 · Cited by 43 · see citing works
Self-citationNegative and positive illness representations of rheumatoid arthritis: a latent profile analysis
Norton, S., Hughes, L. D., Chilcot, J., Sacker, A., van Os, S., Young, A., & Done, J. (2013) · Journal of Behavioral Medicine · doi:10.1007/s10865-013-9506-9 · Cited by 40 · see citing works
Illness perception patterns in patients with Coronary Artery Disease
Kunschitz, E., Friedrich, O., Schöppl, C., Maitz, J., & Sipötz, J. (2016) · Psychology Health & Medicine · doi:10.1080/13548506.2016.1271439 · Cited by 25 · see citing works
Fischer, M. J., Ketelaar, M., van der Veere, P. J., Verhoef, M., Wadman, R. I., Visser‐Meily, J. M. A., van der Pol, W. L., & Schröder, C. D. (2020) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-020-09749-7 · Cited by 23 · see citing works
Gould, R. L., Thompson, B. J., Rawlinson, C., Kumar, P., White, D., Serfaty, M. A., Graham, C. D., McCracken, L. M., Bursnall, M., Bradburn, M., et al. (2022) · BMC Neurology · doi:10.1186/s12883-022-02950-5 · Cited by 16 · see citing works
Self-citationO’Connor, S. S., Hevey, D., & O’Keeffe, F. M. (2022) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-022-09851-2 · Cited by 19 · see citing works
Rose, M. R., Norton, S., Vari, C., Edwards, V., McCracken, L., Graham, C. D., Radunovic, A., & Chalder, T. (2018) · BMJ Open · doi:10.1136/bmjopen-2018-022083 · Cited by 15 · see citing works
Self-citationUsing Illness Perceptions to Cluster Chronic Pain Patients
Frostholm, L., Hornemann, C., Ørnbøl, E., Fink, P., & Mehlsen, M. Y. (2018) · Clinical Journal of Pain · doi:10.1097/ajp.0000000000000627 · Cited by 13 · see citing works
Illness representations and psychological outcomes in chronic lymphocytic leukaemia
Arrato, N. A., Valentine, T. R., Byrd, J. C., Jones, J. A., Maddocks, K. J., Woyach, J. A., & Andersen, B. L. (2021) · British Journal of Health Psychology · doi:10.1111/bjhp.12562 · Cited by 12 · see citing works
Orbell, S., Henderson, C. J., & Hagger, M. S. (2015) · Annals of Behavioral Medicine · doi:10.1007/s12160-015-9719-y · Cited by 11 · see citing works
Graham, C. D., Chalder, T., Rose, M. R., Gavriloff, D., McCracken, L. M., & Weinman, J. (2017) · The Cognitive Behaviour Therapist · doi:10.1017/s1754470x17000022 · Cited by 9 · see citing works
Self-citationMurray, R., Donnelly, C. M., Drescher, K. D., & Graham, C. D. (2024) · Muscle & Nerve · doi:10.1002/mus.27964 · Cited by 8 · see citing works
Self-citationEdwards, V., Vari, C., Rose, M. R., Graham, C. D., O’Connell, N., Taylor, E., McCracken, L. M., Radunović, A., Rakowicz, W., Norton, S., et al. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2023.1233526 · Cited by 7 · see citing works
Self-citationKajiwara, Y., & Morimoto, M. (2023) · PLoS ONE · doi:10.1371/journal.pone.0283701 · Cited by 7 · see citing works
Graham, C. D., Rose, M. R., Edwards, V., Vari, C., O’Connell, N., Taylor, E., McCracken, L. M., Radunovic, A., Rakowicz, W., Norton, S., et al. (2024) · Muscle & Nerve · doi:10.1002/mus.28322 · Cited by 4 · see citing works
Self-citationOllhoff, R. D. (2003) · Archives of Veterinary Science · doi:10.5380/avs.v8i2.4034 · Cited by 4 · see citing works
Tshikuka, J., Magafu, M. G. M. D., Molefi, M., Masupe, T., Matchaba-Hove, R., Mbongwe, B., & Tapera, R. (2016) · International Journal of Statistics in Medical Research · doi:10.6000/1929-6029.2016.05.03.7 · Cited by 4 · see citing works
An Evaluation of the Influence of Perceptions of Breast Cancer on Distress in Irish Women
Gibbons, A. (2013) · Arrow@dit (Dublin Institute of Technology) · doi:10.13025/15855 · Cited by 1 · see citing works
Experiences of acceptance among individuals with hereditary angioedema: a qualitative brief report
Burton, A. E., Owen, A. L., Herron, D., Elliott, J., Lindsay-Wiles, I., & Diwakar, L. (2026) · Journal of Rare Diseases · doi:10.1007/s44162-026-00192-4
Drescher, K., van Bruggen, M., Bosquez, T. G., Graham, C. D., Piccolo, C. C. D. C., van Engelen, B. G. M., & Voet, N. B. M. (2026) · Neuromuscular Disorders · doi:10.1016/j.nmd.2026.106489
Self-citation
- Authors
- Graham, C. D., Rose, M. R., Hankins, M., Chalder, T., & Weinman, J.
- Affiliations
- Guy's Hospital (GB)
- King's College Hospital (GB)
- University of Southampton (GB)
- King's College London (GB)
- Corresponding author
- Graham, Christopher D.
- Venue
- Journal of Psychosomatic Research
- Publisher
- Elsevier BV
- Published
- 2013-04
- Volume
- 74
- Issue
- 4
- Pages
- 320-326
- ISSN
- 0022-3999 (ISSN-L)
- OpenAlex
- W2102368206
- Cited by
- 27
- References
- 31
- Citations by year
- 2026: 2 · 2024: 1 · 2023: 3 · 2022: 2 · 2021: 2 · 2020: 2 · 2018: 2 · 2017: 1 · 2016: 3 · 2015: 1 · 2014: 4 · 2013: 3
- FWCI
- 1.83
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Psychosomatic Research (publishedVersion)
- PubMed (publishedVersion)
- ePrints Soton (University of Southampton) (acceptedVersion)
- Research Portal (King's College London) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Keywords
- myopathy, illness perception, quality of life, mood, emotion representation, emotional impact, functional disability, psychological intervention, clustering, patient-reported outcomes
- MeSH terms
- Adult, Affect, Aged, Attitude to Health, Emotions, Female, Humans, Male, Middle Aged, Muscular Diseases, Quality of Life, Self Concept, Severity of Illness Index, Cluster Analysis, Illness Behavior
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
