Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study

<p>Abstract</p> <p>Background</p> <p>Research interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables.</p> <p>Methods</p> <p>Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness.</p> <p>Results</p> <p>The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P < 0.01), but higher QOL than the patients. When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains. Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role. Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL.</p> <p>Conclusion</p> <p>Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.</p

Relationship of depression, disability, and family caregiver attitudes to the quality of life of Kuwaiti persons with multiple sclerosis: a controlled study

<p>Abstract</p> <p>Background</p> <p>Assessment of subjective quality of life (QOL) of persons with multiple sclerosis (MS) could facilitate the detection of psychosocial aspects of disease that may otherwise go unrecognized. The objectives of the study were to (i) compare the QOL ratings of relapsing remitting (RRMS) and progressive (PMS) types of MS with those of a general population group and the impression of their family caregivers; and (ii) assess the association of demographic, clinical, treatment, depression, and caregiver variables with patients' QOL.</p> <p>Methods</p> <p>Consecutive clinic attendees at the national neurology hospital were assessed with the 26 -item WHOQOL Instrument, Beck's Depression Inventory and Expanded Disability Scale. Caregivers rated their impression of patients' QOL and attitudes to patients' illness.</p> <p>Results</p> <p>The 170 patients (60 m, 109 f) consisted of 145(85.3%) with RRMS and 25 with PMS, aged 32.4(SD 8.8), age at onset 27.1(7.7), EDSS score 2.9 (1.8), and 76% were employed. The patients were predominantly dissatisfied with their life circumstances. The RRMS group had higher QOL domain scores (P < 0.001), and lower depression(P > 0.05) and disability (P < 0.0001) scores than the PMS group. Patients had significantly lower QOL scores than the control group (P < 0.001). Caregiver impression was significantly correlated with patients' ratings. Depression was the commonest significant covariate of QOL domains. When we controlled for depression and disability scores, differences between the two MS groups became significant for only one (out of 6) QOL domains. Patients who were younger, better educated, employed, felt less sick and with lesser side effects, had higher QOL. The predictors of patients' overall QOL were disability score, caregiver impression of patients' QOL, and caregiver fear of having MS.</p> <p>Conclusion</p> <p>Our data indicate that MS patients in stable condition and with social support can hope to have better QOL, if clinicians pay attention to depression, disability, the impact of side effects of treatment and family caregiver anxieties about the illness. The findings call for a regular program of psychosocial intervention in the clinical setting, to address these issues and provide caregiver education and supports, in order to enhance the quality of care.</p

Factors associated with quality of life of outpatients with breast cancer and gynecologic cancers and their family caregivers: a controlled study

<p>Abstract</p> <p>Background</p> <p>Quality of life (QOL) issues are of interest in cancer because effective methods of treatment and detection have led to an increase in the number of long-term survivors. The objectives of the study were: to assess the subjective QOL of stable Sudanese women cancer outpatients and their family caregivers, using the WHO 26-item QOL Instrument; compare with matched general population groups, as well as diabetic and psychiatric patient groups; examine patient-caregiver concordance in ratings; and assess the variables associated with their QOL, with a view to identifying factors that can enhance quality of care.</p> <p>Methods</p> <p>Responses of oncology outpatients with breast cancer (117), cervical cancer (46) and ovarian cancer (18) (aged 44.6, SD 11.5) were compared with those of their family caregivers and matched general population groups. Data were analyzed by univariate and multivariate statistics.</p> <p>Results</p> <p>The cancer groups had similar QOL domain scores, which were significantly lower than those of their caregivers, but higher than the control group as well as those of psychiatric and diabetic patients studied previously. Patients who were married, with higher education, better employment, and with longer duration of illness had higher QOL. Patients on radiotherapy and their caregivers had higher QOL scores. Correlations between patient's ratings and caregiver impression of patient's QOL were high. Caregiver impression was a significant predictor of patient's and caregiver's QOL. Other predictors for the patient were: currently feeling sick and duration of illness; for the caregiver: feeling sick, relationship to patient, and age.</p> <p>Conclusion</p> <p>Cancer patients in stable condition and with psychosocial support can hope to enjoy good QOL with treatment. The findings constitute an evidence base for the country's cancer care program, to boost national health education about prognosis in cancer. Families living with women cancer patients are vulnerable and need support if the patient is recently diagnosed, less educated, single, not formally employed; and the caregiver is female, parent, younger, less educated, unemployed and feels sick. Clinicians need to invest in the education and support of family caregivers. The patient-caregiver dyad should be regarded as a unit for treatment in cancer care.</p

The reliability and validity of the short version of the WHO Quality of Life Instrument in an Arab general population

<b>Background and Objectives: </b> There is rising interest in quality of life (QOL) research in Arabian countries. The aim of this study was to assess in a nationwide sample of Kuwaiti subjects the reliability and validity of the World Health Organization Quality of Life (WHOQOL-BREF), a shorter version of the widely used QOL assessment instrument that comprises 26 items in the domains of physical health, psychological health, social relationships, and the environment. <b> Methods: </b> A one-in-three systematic random proportionate sample of consenting Kuwaiti nationals attending large cooperative stores and municipal government offices in the six governorates completed the Arabic translation of the questionnaire. The indices assessed included test-retest reliability, internal consistency, item internal consistency (IIC), item discriminant validity (IDV), known-groups and construct validity. <b> Results: </b> There were 3303 participants (44.8&#x0025; males, 55.2&#x0025; females, mean age 35.4 years, range 16 to 87 years). The intra-class correlation for the test-retest statistic and the internal consistency values for the full questionnaire and the domains had a Cronbach&#x2032;s alpha?0.7. Of the 24 items that constitute the domains, 21 met the IIC requirement of correlation ?0.4 with the corresponding domain, while 16 met the IDV criterion of having a higher correlation with their corresponding domain than other domains. Domain scores discriminated significantly between well and sick groups. In the factor analysis, four strong factors emerged with the same construct as in the WHO report. <b> Conclusion: </b> The Arabic translation of the WHOQOL-BREF has impressive reliability and validity indices. The poor IDV findings are due to the multidimensional nature of the questionnaire. The highly significant validity indices should reassure researchers that the questionnaire represents the same constructs across cultures. Negatively worded items possibly need refinement