HD Lighthouse Contributing Editor's Comment: Researchers from the Netherlands compared the perceptions of HD patients and their caregiver partners about Huntington's Disease and the patient's own symptoms. Patients and partners did not differ significantly in their ideas and perceptions about the causes, consequences, duration, and curability of the disease.

However, patients and partners did disagree about the patient's own symptoms, with partners seeing more symptoms than the patient, and they disagreed over the degree of control that the patient had over the disease, with the patients believing that they had more control.

On a positive note, it is good to see a Huntington's Disease study which includes caregiver partners. But it is frustrating that the variables investigated are perceptions and not the reality. What does it mean that caregivers see more symptoms in their partner with HD than the patient himself or herself sees? Are caregivers attributing too many problems to HD or are their partners with HD in denial? I would like to see a study which uses objective measures to answer the question.

The researchers found that both patient and partner perceptions have an impact on some aspects of quality of life for the patient. They write about the importance of understanding the effect of perceptions on patient outcomes.

The obvious problem here is that correlation is not the same thing as causation. There is no more reason to think that perceptions determine quality of life than that quality of life determines perceptions and each might influence the other.

Equally problematic is that the quality of life is measured through a self report scale. The Medical Outcomes Study: 36-Item Short Form Survey Instrument may be reviewed here: http://www.rand.org/health/surveys_tools/mos/mos_core_36item_survey.html. Actual quality of life is not being measured but rather the respondent's own perceptions of quality of life.

Of course, to some extent quality of life is subjective. A caregiver who enjoys staying home and was never interested in much socializing may be more content than a caregiver who has been used to a very active social life, for example. A Huntington's patient who very active in sports may perceive a lesser quality of life as the disease progresses and he cannot participate with friends in golfing or tennis than would a less physically active individual. And we do want to know what the patient and partner respondents think about their lives.

It is important, however, for professionals to realize that there are real differences in quality of life for HD patients and their caregiver partners that can be assessed and measured and should be.

The difference in partner and patient perceptions may have real consequences for quality of life. If a caregiver perceives a partner as more impaired than is objectively the case, that caregiver may inadvertently push the patient farther into the sick role than he or she needs to be, possibly resulting in social isolation, loss of vitality, and lost earnings. If a patient perceives himself to be less impaired than he is objectively, he may drive or engage in other activities when it isn't safe, become alienated from friends and family over meaningless quarrels. He may persist in working at a job he can no longer adequately perform and risk being fired when he could have retained benefits by going out on disability.

And finally, I would like to add that we need a study which measures the effect of physician perceptions on the objective quality of life of the patient and family. Physicians who do not perceive that HD has affected a patient until a threshold of physical symptoms has been crossed may negatively impact a patient and his family by failing to intervene as jobs and benefits are lost and the patient's support network becomes alienated.

-- Marsha L. Miller, Ph.D.
Posted to the HDL: 19 May 2007

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

A. Kaptein, M. Scharloo, D. Helder, L. Snoei, G. Van Kempen, J. Weinman, J. Van Houwelingen, and R. Roos

Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients' quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington's disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners' beliefs in a long duration of the patients' illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches. # # #

Source: Quality of Life Research 2007 Jun;16(5):793-801.

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