Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions

Kaptein, Adrian A.; Scharloo, Margreet; Helder, D I; Snoei, Lucia; Kempen, G.M.J. Van; Weinman, John; Houwelingen, Hans C. van; Roos, Raymund A.C.

doi:10.1007/s11136-007-9194-4

Cited by 51 publications

(53 citation statements)

References 48 publications

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“…Caregivers also perceived their loved one with HD as much more impaired than the individual themselves. This may be attributed to anosognosia (unawareness) that has previously been reported in HD and other neurological disorders [7][8]. Approximately 67% of caregivers responded that unawareness made it harder for their loved one to manage symptoms that were treatable with medication (Supplementary data 2).…”

Section: Discussionmentioning

confidence: 92%

Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs

Simpson

Lovecky

Kogan³

et al. 2016

JHD

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Background: In preparation for a meeting with the U.S. Food and Drug Administration (FDA) on Patient-Focused Drug Development in Huntington's disease, the Huntington's Disease Society of America (HDSA) created and distributed two comprehensive surveys on the symptom experience and treatment approaches for Huntington's disease. Objective: The objective of these surveys was to identify the specific symptoms that most impact the daily lives of individuals with Huntington's disease/Juvenile Huntington's disease (HD/JHD) and their caregivers and to solicit input on the types of treatments desired by HD affected families. The data were shared with the FDA to offer background and insight in preparation for the patient-focused meeting, as well as to ensure representation by the community in a manner that would complement those who attended in person. Methods: Two distinct surveys were created using SurveyMonkey to capture patient and caregiver perspectives on HD symptoms and current treatments. HDSA distributed the surveys to the HD community in August and September 2014 and collected responses through January 2015. Results: More than 3,600 responses to the two surveys were received. The data showed that both caregivers and individuals with HD were severely impacted by the cognitive and behavioral symptoms of HD with HD patients reporting problems with executive functioning and cognitive decline as most impactful to them. However, 30 percent of caregivers reported that chorea was the most impactful symptom compared to 17 percent of people with HD. Across all the symptom categories, patients reported a lower occurrence of symptoms than were reported by their caregivers. Conclusions: With only one drug approved for treatment of a symptom of Huntington's disease and no disease modifying treatments available, there is a critical need for new medicines to treat the cognitive, psychiatric and motor symptoms associated with HD. While the surveys did not capture risk/benefit data, the data collected do provide new insights around the different perspectives of patients and caregivers. We believe that industry development of treatments would be well-informed by incorporating the patient community, which is more knowledgeable and engaged than given credit, in consideration of treatment regimens, risk-benefit and priorities for therapeutic development.

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Section: Discussionmentioning

confidence: 92%

Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs

Simpson

Lovecky

Kogan³

et al. 2016

JHD

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“…Patient and relative scores have been categorized in terms of their similarity or dissimilarity [12,19]; relative scores have been subtracted from patient scores to provide an estimate of incongruence [13,[20][21][22]; and patient and relative scores have been entered as separate covariates in a regression analysis [23,24]. However, for our analyses, we hypothesized that the carer's illness perceptions may moderate the relationship between the survivor's illness perceptions and their level of psychological distress (see [11,25]).…”

Section: Discussionmentioning

confidence: 99%

Illness perceptions among carer–survivor dyads are related to psychological distress among Oesophageal cancer survivors

Dempster¹,

McCorry²,

Brennan³

et al. 2011

Journal of Psychosomatic Research

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“…Second, the information can be shared among community members and may supplement existing knowledge. Third, it can also be used to dispel misperceptions through awareness campaigns, encourage healthcare providers to address common misunderstandings and also derive interventions to modify illness representations in both patients and nonpatients (Hagger and Orbell, 2003;Kaptein et al, 2007). Relatively few studies have been conducted in India, nationally and at a state-level, examining lay people's illness representations.…”

Section: 845 Illness Representations Of Cancer Among Healthy Residenmentioning

confidence: 99%

Illness Representations of Cancer among Healthy Residents of Kolkata, India

Wagner¹,

Bigatti²

2015

Asian Pacific Journal of Cancer Prevention

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Cancer illness representations and screening history among residents of Kolkata, India, were investigated along with socio-demographic characteristics in an effort to understand possible motivations for health behavior. A total of 106 participants were recruited from community locations in Kolkata, India and completed surveys including demographics, the illness perception questionnaire-revised (IPQ-R), and previous experience with cancer and screening practices. Participants were 51.5% college educated, 57% female, 51.5% full-time employed with average age of 32.7 years (R: 18-60 years). Descriptive statistics were generated for the subscales of the IPQ-R, cancer-screening practices and cancer experience. Correlation analyses were conducted to investigate associations between cancer representations and socio-demographic variables. Univariate ANOVAs were calculated to determine gender differences in IPQ-R subscales and differences between participants who knew someone diagnosed with cancer versus those who did not. While 76% of participants knew someone with cancer, only 5% of the sample engaged in cancer screening. Participants perceived cancer as a serious illness with negative emotional valence. Younger age (r(100)=-.36, p<0.001) and male gender (F(1, 98)=5.22, p=0.01, η 2 =0.05) were associated with better illness coherence. Males also reported greater personal control (F(1, 98)=5.34, p=0.02, η 2 =0.05) were associated with better illness coherence. Low screening rates precluded analyses of the relationship between illness representations and cancer screening. Cancer was viewed as a threatening and uncontrollable disease among this sample of educated, middle class Kolkata residents. This view may act as a barrier to seeking cancer screening. Public awareness campaigns aimed at improving understanding of the causes, symptoms and consequences of cancer might reduce misunderstandings and fear, especially among women and older populations, who report less comprehension of cancer.

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Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions

Cited by 51 publications

References 48 publications

Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs

Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs

Illness perceptions among carer–survivor dyads are related to psychological distress among Oesophageal cancer survivors

Illness Representations of Cancer among Healthy Residents of Kolkata, India

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