Illness intrusiveness, uncertainty, and distress in individuals with multiple sclerosis.

Mullins, Larry L.; Cote, Max P.; Fuemmeler, Bernard F.; Jean, Vickie M.; Beatty, William W.; Paul, Robert

doi:10.1037/0090-5550.46.2.139

Cited by 119 publications

(97 citation statements)

References 48 publications

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“…The MUIS-C yields a single composite score, with higher scores reflecting greater uncertainty. Previous studies have shown the MUIS-C to be a reliable and valid measure of illness uncertainty across a number of chronic disease states (Bailey & Nielson, 1993;Mullins et al, 2001;Mullins et al, 1995). Alpha reliability estimates have been reported as moderate to high for a variety of illness populations (Mishel et al, 1991) and alpha was .87 in the present study.…”

Section: Methodssupporting

confidence: 58%

“…Research has shown that high levels of uncertainty were most often associated with more perceived stressrelated hospital events (Mishel, 1984), less hope (Wineman, Schwetz, Goodkin, & Rudick, 1996), more illness intrusiveness , and greater emotional distress and mood disturbance, specifically more anxiety, tension, anger, and depression (Landis, 1996;Mast, 1995;McCormick, 2002;Mullins et al, 2001). Mullins et al (1995) found illness uncertainty to be the strongest predictor of psychological distress in a post-polio syndrome population.…”

Section: Introductionmentioning

confidence: 99%

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The role of illness uncertainty on coping with fibromyalgia symptoms.

2006

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Uncertainty is a common component of the illness experience and can increase the burden of managing chronic illness. The present study examined the role of illness uncertainty in pain coping among 51 women with Fibromyalgia (FM), a chronic pain condition of unknown origin. After completing demographic and illness uncertainty questionnaires, participants underwent 10 to 12 weekly interviews regarding pain, coping difficulty, and coping efficacy. Multilevel analyses indicated that pain elevations in the presence of illness uncertainty predicted increases in coping difficulty. Furthermore, when participants had more difficulty coping, they also had lower levels of coping efficacy. Results are consistent with a model where illness uncertainty accompanied by episodic pain negatively affects coping efficacy, an important resource in adaptation to FM. KeywordsIllness uncertainty; pain; coping difficulty; coping efficacy; fibromyalgia Uncertainty is a salient issue for many who have been diagnosed with life-threatening or chronic illnesses (Mast, 1995;Mishel, 1999), particularly for those whose illness itself has no known organic cause. One such prevalent condition is Fibromyalgia (FM). FM has been characterized by the presence of widespread and often unpredictable musculoskeletal pain, tenderness, fatigue, stiffness, and sleep disturbance. However, it has also been associated with numerous psychosocial conditions, such as depression, anxiety, and physical and sexual abuse (Wolfe & Hawley, 1999;Wolfe, Ross, Anderson, Russell, & Hebert, 1995). Not only do FM patients have a greater number of comorbid physical and psychological conditions than many other chronic pain conditions, but they also have more difficulty coping with their condition (Zautra, Hamilton & Burke, 1999). Furthermore, because the syndrome is characterized by multiple symptoms with no known organic basis, FM is difficult to treat (MacFarlane et al., 2001;Wolfe & Hawley, 1999). According to a meta-analysis conducted by Rossy et al. (1999), the optimal treatment for FM consists of a combination of nonpharmacological treatments, such as exercise, education, and cognitive-behavioral therapy and medication management for sleep and pain symptoms. Although these treatments may be helpful in alleviating symptoms of FM, they are not always effective and there is variable resolution of symptoms.To further our understanding of the difficulties in adjustment for FM patients, we sought to examine a variable that differentiates FM from other rheumatic diseases. Illness uncertainty has been found to be significantly higher in FM compared to OA patients (Reich, Olmsted, & Van Puymbroeck, in press sense of loss of control, and a perception about one's illness that changes over time (Mast, 1995, Weiner & Dodd, 1993. Mishel defines illness uncertainty as "the inability to determine the meaning of illness-related events (that) occurs in situations where the decision-maker is unable to assign definite values to objects and events and/or is unable to accurately predi...

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Section: Methodssupporting

confidence: 58%

Section: Introductionmentioning

confidence: 99%

The role of illness uncertainty on coping with fibromyalgia symptoms.

2006

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“…It affects around 100 000 people in the UK and has no known cure (Multiple Sclerosis Society, 2008). Individuals with MS experience irregular relapses and a downward progression of the illness, and the unknown eventual level of functional impairment and disruptions in daily functioning contribute to the perception of it being a highly unpredictable illness (Mullins et al, 2001; Thomas et al, 2006).…”

Section: Hannah Rose Wilkinson and Roshan Das Nairmentioning

confidence: 99%

The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis

Rose

Nair

2013

British Journal of Neuroscience Nursing

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Rose, Hannah and das Nair, Roshan (2013) The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis. British Journal of Neuroscience Nursing, 9 (4). pp. A note on versions:The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription.For more information, please contact eprints@nottingham.ac.uk ABSTRACT Background: Multiple sclerosis (MS) is a neurological conditioncharacterised by an unpredictable nature. This characteristic is reported to be the largest challenge for individuals with the condition. Chronic illness literature highlights the psychological impact of unpredictability, but there is a paucity of research examining this concept in MS. Objectives: This systematic review aimed to explore the psychological impact of unpredictability in MS. Methods: A meta-synthesis was conducted. A total of 6 studies with 59 participants were reviewed and critically appraised. Themes relating to the psychological impact of unpredictability were extracted and synthesised. Results: A preliminary model of the unpredictability of MS was developed highlighting the different psychological impacts of diagnosis, remission and relapse. Conclusions: The psychological impact of unpredictability alters through diagnosis, remission and relapse. Further research is required to explore the experience of unpredictability in MS.

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“…Mullins et al (2001) afirmam que a intrusividade e imprevisibilidade características da EM impõem exigências adicionais à capacidade de enfrentamento dos pacientes, podendo contribuir para o surgimento de manifestações psicopatológicas.…”

Section: P#005unclassified

Qualidade de vida relacionada à saúde de pacientes com esclerose múltipla antes do transplante de células-tronco hematopoéticas

Crovador¹,

Cardoso²,

Mastropietro³

et al. 2013

Psicol. Reflex. Crit.

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Resumo AbstractThis study aimed to evaluate quality of life (QoL) and psychological vulnerability (anxiety, stress and depression) of patients with multiple sclerosis (MS) who would undergo Hematopoietic Stem Cell Transplantation (HSCT). The sample consisted of 13 patients. The following instruments were used: MOS 36-Item Short-Form Health Survey (SF-36), Hospital Anxiety and Depression Scale (HAD) and Lipp's Stress Symptoms Inventory for Adults (ISSL). Data analysis was performed according to specific recommendations for each instrument. The obtained results showed that the physical and mental damage the illness (and/or transplantation) imposed is significantly related with the emergence of depression, anxiety and stress in participants. Keywords: Multiple sclerosis, hematopoietic stem cells transplantation, quality of life, anxiety, depression.A esclerose múltipla (EM) faz parte de um grupo de agravos conhecidos como doenças autoimunes (DAI). É uma doença neurológica, inflamatória crônica, caracterizada por episódios recorrentes de disfunção neurológi-ca com remissão variável, ou seja, apresenta evolução usualmente não linear, com piora dos sintomas e acúmulo de incapacidades, intercalados por períodos variáveis de melhora (Mendes, Balsimelli, Stangehaus, & Tilbery, 2004;Tilbery et al., 2005).A hipótese patogênica mais aceita é que a EM seja um fruto da conjunção de uma determinada predisposição genética e um fator ambiental desconhecido, que, ao se apresentarem em um mesmo indivíduo, originariam uma disfunção do sistema imunológico. Esse sistema desenvolveria uma ação autolesiva dirigida fundamentalmente contra a substância branca, com perda de oligodendrócitos e mielina, o que ocasionaria um defeito na condução dos impulsos nervosos e condicionaria o aparecimento dos sintomas (Moreira, Felipe, Mendes, & Tilbery, 2000).A EM afeta mais frequentemente a raça branca, o jovem adulto e o sexo feminino. A forma surto-remissiva acomete até 85% dos pacientes. As manifestações iniciais mais comuns são as alterações piramidais, sensitivas e cerebelares .A característica mais evidente da EM é a ocorrência do surto expresso por sintomas neurológicos transitórios, dependentes das lesões distribuídas pelo Sistema Nervoso Central (SNC). Entende-se por surto a exacerbação ou agudização dos sintomas, ou seja, a ocorrência de

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Illness intrusiveness, uncertainty, and distress in individuals with multiple sclerosis.

Cited by 119 publications

References 48 publications

The role of illness uncertainty on coping with fibromyalgia symptoms.

The role of illness uncertainty on coping with fibromyalgia symptoms.

The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis

Qualidade de vida relacionada à saúde de pacientes com esclerose múltipla antes do transplante de células-tronco hematopoéticas

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