Health and Quality of Life Outcomes - Latest articles

Characterizing the burden of premature ejaculation from a patient and partner perspective: a multi-country qualitative analysis

2008-05-12

Background: Premature ejaculation (PE) is a common sexual dysfunction among men which affects men and their partners. Little qualitative data are available to characterize the impact of PE on men and their partners about ejaculatory control, sexual satisfaction, emotional distress and relationships. The objective of this study was to assess the impact of PE from the perspective of men with PE and the female partners of men with PE on their sexual experience, distress and relationships. Methods: Qualitative data were collected through 14 focus groups in the US and through one-on-one interviews in the US, UK, Italy, France, Germany, and Poland. Study participants included heterosexual men with PE and female partners of males with PE. All participants were asked about how PE affects their daily life, including emotional impacts. One-on-one interviews also included obtaining feedback on the male and female versions of 4-single item measures of PE focusing on ejaculatory control, satisfaction with intercourse, interpersonal distress, and relationship difficulty. Results: Participants included 172 males with PE and 67 female partners of men with PE. Lack of control over ejaculation and dissatisfaction with intercourse emerged as central themes of PE. Lack of ejaculatory control resulted in greater dissatisfaction and greater emotional distress, including feelings of inadequacy, disappointment, and anxiety. Continued PE ultimately leads to greater problems with partners and often disrupts partner relationships. Participants indicated that PE was keeping them from attaining complete intimacy in their relationships even when their partners were generally satisfied with sexual intercourse. Impacts of PE on sexual satisfaction, emotional distress and partner relationships were consistent across countries. Feedback on the single-item PE measures confirmed relevance of the item content and further confirmed major themes identified from the qualitative data. Conclusion: This qualitative study provides valuable insights on the substantial psychosocial burden of PE in the US and the Europe. Lack of control over ejaculation resulted in dissatisfaction with intercourse and increased emotional distress, and wide-ranging impact for both men with PE and their partners of men with PE. Data collected in this study may help inform the content of new patient reported measures for use in PE research.

Validation of the nausea and vomiting of pregnancy specific health related quality of life questionnaire

Anais Lacasse and Anick Berard — 2008-05-09

Background: The only existing NVP-specific quality of life (QOL) questionnaire is the "Health-Related Quality of Life for Nausea and Vomiting during Pregnancy" (NVPQOL). However, the reliability and valdity of the NVPQOL have never been established. In order to justify its usage, the internal consistency and criterion validity of the NVPQOL questionnaire must be ascertained. Methods: A prospective observational study including pregnant women attending CHU Sainte-Justine or Rene-Laennec clinics for their prenatal care was conducted from 2004 to 2006. Women were eligible if they were at least 18 years of age and in their 16 first weeks of gestation at the time of their first prenatal visit. During this initial visit, women who reported NVP were also asked to complete the NVPQOL and the SF-12. Cronbach's alpha coefficients were calculated as the measures of the internal consistency of the NVPQOL. With respect to the criterion validity, linear regression models were built to measure the association between the NVPQOL and the SF-12 scores. Results: Of the 367 women included in the study, 288 (78.5%) reported NVP in the first trimester of pregnancy. Among these women, the Cronbach's alpha coefficients were high for the complete NVPQOL questionnaire (alpha = 0.98), and for the four distinct domains [physical symptoms and aggravating factors (alpha = 0.90); fatigue (alpha = 0.94); emotions (alpha = 0.86); limitations (alpha = 0.97)]. NVP-specific QOL as measured by the NVPQOL was significantly associated with physical and mental QOL as measured by the SF-12. Conclusions: Our data suggest that the NVPQOL is a reliable and valid index to measure NVP-specific QOL in the first trimester of pregnancy.

The Reflux Disease Questionnaire: a measure for assessing treatment response in clinical trials

2008-04-30

Background: Critical needs for treatment trials in gastroesophageal reflux disease (GERD) include assessing response to treatment, evaluating symptom severity, and translation of symptom questionnaires into multiple languages. We evaluated the previously validated Reflux Disease Questionnaire (RDQ) for internal consistency, reliability, responsiveness to change during treatment and the concordance between RDQ and specialty physician assessment of symptom severity, after translation into Swedish and Norwegian. Methods: Performance of the RDQ after translation into Swedish and Norwegian was evaluated in 439 patients with presumed GERD in a randomized, double-blind trial of active treatment with a proton pump inhibitor. Results: The responsiveness was excellent across three RDQ indicators. Mean change scores in patients on active treatment were large, also reflected in effect sizes that ranged from a low of 1.05 (dyspepsia) to a high of 2.05 (heartburn) and standardized response means 0.99 (dyspepsia) and 1.52 (heartburn). A good positive correlation between physician severity ratings and RDQ scale scores was seen. The internal consistency reliability using alpha coefficients of the scales, regardless of language, ranged from 0.67 to 0.89. Conclusions: The results provide strong evidence that the RDQ is amenable to translation and represents a viable instrument for assessing response to treatment, and symptom severity.

Do quality of life, participation and environment of older adults differ according to level of activity?

Melanie Levasseur, Johanne Desrosiers and Denise St-Cyr Tribble — 2008-04-29

Background: Activity limitation is one of the most frequent geriatric clinical syndromes that have significant individual and societal impacts. People living with activity limitations might have fewer opportunities to be satisfied with life or experience happiness, which can have a negative effect on their quality of life. Participation and environment are also important modifiable variables that influence community living and are targeted by health interventions. However, little is known about how quality of life, participation and environment differ according to activity level. This study examines if quality of life, participation (level and satisfaction) and perceived quality of the environment (facilitators or obstacles in the physical or social environment) of community-dwelling older adults differ according to level of activity. Methods: A cross-sectional design was used with a convenience sample of 156 older adults (mean age = 73.7; 76.9% women), living at home and having good cognitive functions, recruited according to three levels of activity limitations (none, slight to moderate and moderate to severe). Quality of life was estimated with the Quality of Life Index, participation with the Assessment of Life Habits and environment with the Measure of the Quality of the Environment. Analysis of variance (ANOVA) or Welch F-ratio indicated if the main variables differed according to activity level. Results: Quality of life and satisfaction with participation were greater with a higher activity level (p < 0.001). However, these differences were clinically significant only between participants without activity limitations and those with moderate to severe activity limitations. When activity level was more limited, participation level was further restricted (p < 0.001) and the physical environment was perceived as having more obstacles (p < 0.001). No differences were observed for facilitators in the physical and social environment or for obstacles in the social environment. Conclusions: This study suggests that older adults' participation level and obstacles in the physical environment differ according to level of activity. Quality of life and satisfaction with participation also differ but only when activity level is sufficiently disrupted. The study suggests the importance of looking beyond activity when helping older adults live in the community.

Prevalence of and factors influencing posttraumatic stress disorder among mothers of children under five in Kabul, Afghanistan, after decades of armed conflicts

2008-04-23

Background: In the period following wars and other forms of armed conflict, health and quality of life of mothers is a major concern as they have the closest contact with children. The present study was performed to examine the impact of exposure to events related to armed conflicts on post traumatic stress disorder (PTSD) among women raising children, and to identify factors that alleviate the negative consequences of exposure to traumatic events. Methods: A structured interview survey was conducted in Kabul Province, Afghanistan, in 2006. The subjects were the mothers of children less than 5 years old randomly selected from 1400 households in Kabul Province, Afghanistan. Symptoms of PTSD were assessed according to the criteria of Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). Exposure to traumatic events related to armed conflict, experience of hardship with regard to basic needs, resources that the subjects seek for mental health support, and socioeconomic variables were evaluated. Logistic regression analysis was performed to determine the association between PTSD symptoms and predictor variables. Results: The prevalence rate of PTSD among 1172 women participated in this study was 29.8%. The most prevalent symptom was arousal (74.8%), followed by re-experiencing (54.9%) and avoidance (33.7%). The prevalence rate of PTSD symptoms among subjects who reported having experienced at least one event related to armed conflict (52.7%) was significantly higher than that among those who reported no such experiences (9.6%). Experience of food shortage was independently associated with PTSD. Seeking support for mental health was related to lower prevalence of PTSD symptoms among those who reported no direct experience of events related to armed conflict. However, no such relationship was observed with PTSD symptoms among those who reported having direct experience of events related to armed conflict. Conclusion: Direct exposure to traumatic events was significantly associated with PTSD symptoms among women raising children. For those who had experienced armed conflict-related events, food security mitigated the occurrence of PTSD symptoms; however, support seeking behavior did not show a significant mitigating influence on PTSD. Means to alleviate the negative influence of exposure to armed conflicts on the quality of life of women should be developed from the viewpoint of quality of mental health support and avoidance of material hardship.

Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorders

Ana R Sepulveda, Jenna Whitney, Matthew Hankins and Janet Treasure — 2008-04-21

Background: Family members of relatives with eating disorders experience high levels of distress due to the difficulties in their care giving role. However no measures have been developed to measure the specific impact that an individual with an eating disorder has on family life. The aim of this study was to develop a measure to assess the specific caregiving burden of both anorexia nervosa and bulimia nervosa. A secondary aim was to examine whether this measure was sensitive to change. Methods: A new scale, the Eating Disorders Symptom Impact Scale (EDSIS), was generated by a panel of clinicians and researchers based upon quantitative and qualitative work with carers and reviewed by a panel of "expert carers". A cross-sectional study was conducted among carers of relatives with an eating disorder to examine the properties of the new scale. In addition, participants from an ongoing pre-and-post design study completed several self-report questionnaires to assess the sensitivity of the EDSIS to change. Results: A sample of 196 carers of relatives with an eating disorder aged 25–68 compted the scale. A 24-item EDSIS scale was derived with four factors: nutrition, guilt, dysregulated behaviour and social isolation. These explained 58.4% of the variance in carer distress. Reliability was acceptable (Cronbach's alpha ranged from 0.84 to 0.90). The convergent validity of the EDSIS subscales was moderately supported by correlations with a general caregiving measure (Experience of Caregiving Inventory (ECI), r = 0.42 to 0.60), psychological distress (General Health Questionnaire (GHQ-12), r = 0.33) and perceived functioning of the relative (Children Global Assessment Scale (CGAS), r = -30). A sample of 57 primary caregivers completed pre-post intervention assessments and the overall scale (t = 2.3, p < 0.05) and guilt subscale (t = 3.4, p < 0.01) were sensitive to change following a skills training workshop. Conclusion: The EDSIS instrument has good psychometric properties and may be of value to assess the impact of eating disorder symptoms on family members. It may be of value to highlight carers' needs and to monitor the effectiveness of family based interventions.

Validation of an individualised quality of life measure in older day hospital patients

2008-04-18

Background: To test the ease of use, reliability, responsiveness and construct validity of the Patient Generated Index, an individualised quality of life score, in older people attending a Medicine for Older People Day Hospital. Methods: Prospective longitudinal study in patients attending a specialist Medicine for Older People Day Hospital in Scotland. The Patient Generated Index was administered at baseline, one week later, and at the end of Day Hospital attendance. Functional Limitations Profile, Hospital Anxiety and Depression Score, Barthel index and global subjective impressions of change were also collected and compared with baseline scores and change in Patient Generated Index scores. Reliability was assessed using intraclass correlation coefficients in subjects reporting no change in global quality of life; responsiveness was assessed using effect size and Guyatt coefficients in subjects reporting change in global quality of life. External validity was assessed via correlation with measures of physical function, comorbid disease and psychological state. Results: 75 patients were enrolled, mean age 81 years. Mean completion time was 5.0 minutes at baseline. Reliability was moderate (intraclass correlation coefficient 0.72) but there were weak and inconsistent responses to change (effect sizes 0.02 to 0.15; Guyatt responsiveness coefficient 0.29). Patient Generated Index scores correlated with Functional Limitation Profile scores (r = 0.51, p < 0.001), baseline anxiety score (r = -0.25, P = 0.039) and baseline depression score (r = -0.37, P = 0.002) but displayed only weak, non-significant correlation with number of comorbid diseases (r = -0.22, P = 0.07), number of medications (r = -0.21, P = 0.08) and Barthel score (r = 0.09, p = 0.45). Conclusion: The Patient Generated Index appears moderately reliable and easy to complete, but is poorly responsive to change, limiting its usefulness in clinical practice or research.

Voice restoration following total laryngectomy by tracheoesophageal prosthesis: Effect on patients' quality of life and voice handicap in Jordan

2008-03-28

Background: Little has been reported about the impact of tracheoesophageal (TE) speech on individuals in the Middle East where the procedure has been gaining in popularity. After total laryngectomy, individuals in Europe and North America have rated their quality of life as being lower than non-laryngectomized individuals. The purpose of this study was to evaluate changes in quality of life and degree of voice handicap reported by laryngectomized speakers from Jordan before and after establishment of TE speech. Methods: Twelve male Jordanian laryngectomees completed the University of Michigan Head & Neck Quality of Life instrument and the Voice Handicap Index pre- and post-TE puncture. Results: All subjects showed significant improvements in their quality of life following successful prosthetic voice restoration. In addition, voice handicap scores were significantly reduced from pre- to post-TE puncture. Conclusion: Tracheoesophageal speech significantly improved the quality of life and limited the voice handicap imposed by total laryngectomy. This method of voice restoration has been used for a number of years in other countries and now appears to be a viable alternative within Jordan.

Evaluation of quality of life and description of the sociodemographic state in adolescent and young adult patients with phenylketonuria (PKU)

2008-03-26

Background: Normal intellectual and personal development can be expected in early-diagnosed and treated PKU patients. Aim of the study was to analyse quality of life and social status, which are important parameters for an overall estimation of success of treatment apart from intellectual outcome in adult PKU patients. Methods: 67 patients completed a questionnaire on quality of life and social status. Data was compared to the German census on an age matched control collective. Results: Quality of life measured with the Profile of Quality of Life in the Chronically Ill (PLC) revealed mean values for capacity of performance in the patient group in the same range as in the control collective.The analysis of the social state of PKU patients revealed a tendency towards lower or delayed autonomy, and a low rate of forming normal adult relationships in which to have children. Schooling and professional career corresponded approximately to the control collective. Conclusion: Though every chronic disorder must be regarded as restraining, it shows that PKU does not preclude healthy emotional adjustment when the disease is diagnosed early and treated well.

Predictors of quality of life: A quantitative investigation of the stress-coping model in children with asthma

Yvette Peeters, Sandra N Boersma and Hendrik M Koopman — 2008-03-26

Background: Aim of this study is to further explore predictors of health related quality of life in children with asthma using factors derived from to the extended stress-coping model. While the stress-coping model has often been used as a frame of reference in studying health related quality of life in chronic illness, few have actually tested the model in children with asthma.MethodIn this survey study data were obtained by means of self-report questionnaires from seventy-eight children with asthma and their parents. Based on data derived from these questionnaires the constructs of the extended stress-coping model were assessed, using regression analysis and path analysis. Results: The results of both regression analysis and path analysis reveal tentative support for the proposed relationships between predictors and health related quality of life in the stress-coping model. Moreover, as indicated in the stress-coping model, HRQoL is only directly predicted by coping. Both coping strategies 'emotional reaction' (significantly) and 'avoidance' are directly related to HRQoL. Conclusion: In children with asthma, the extended stress-coping model appears to be a useful theoretical framework for understanding the impact of the illness on their quality of life. Consequently, the factors suggested by this model should be taken into account when designing optimal psychosocial-care interventions.

Validation of an Estonian version of the Parkinson's Disease Questionnaire (PDQ-39)

Ülle Krikmann, Pille Taba, Taavi Lai and Toomas Asser — 2008-03-25

IntroductionDiagnosis and management of Parkinson's disease (PD) rely heavily on evaluation of clinical symptoms and patients' subjective perception of their condition. The purpose of this study was to evaluate the validity, acceptability, and reliability of the Estonian version of the 39-question Parkinson 's disease Questionnaire (PDQ-39). Methods: Study subjects were approached during their regular clinic follow-up visits. 104 patients consented to the study and 81 completed questionnaires were used for subsequent testing of psychometric characteristics, validity and reliability. Results: The content validity was assessed through qualitative content analysis during the pilot study. The patients indicated that the questions were relevant to measure the quality of life of people with PD.The analysis of means showed that the ceiling and floor effects of domain results were within the limits of 15% of Summary Index and of all domains except Stigma, Social Support and Communication where the ceiling effect was 16% to 24% of the responses. Convergent validity was interpreted through correlation between disease severity and PDQ-39 domains. There was a statistically significant difference between the domain scores in patients with mild versus moderate PD in domains of Mobility, ADL, and Communication but not for Stigma, Social Support and Cognition. The reliability was good, Cronbach alpha for all domains and summary index was over 0.8 and item-test correlations between domains and summary index ranged from 0.56 to 0.83. Conclusion: The psychometric characteristics of an Estonian version of the PDQ-39 were satisfactory. The results of this study were comparable to the results of previous validation studies in other cultural settings in UK, USA, Canada, Spain and Italy.The Estonian version of the PDQ-39 is an acceptable, valid and reliable instrument for quality of life measurement in PD patients.