A longitudinal study of mental health consumer/survivor initiatives: Part 3—A qualitative study of impacts of participation on new members

This article examines the outcomes of participation in mental health Consumer/Survivor Initiatives (CSIs) and identifies helpful qualities of CSIs through a longitudinal, qualitative study that involved in‐depth interviews of people who experienced severe mental health challenges in Ontario, Canada. We used a nonequivalent control group design in which we compared active participants in CSIs ( n = 15) with nonactive participants ( n = 12) at baseline and at 9‐ and 18‐month follow‐up intervals. Compared with non‐CSI participants, CSI participants reported more stable mental health, enhanced social support, sustained work, stable income, and participation in education and training at 9‐ and 18‐month interviews. The helpful qualities of CSIs that participants reported were (1) safe environments that provide a positive, welcoming place to go; (2) social arenas that provide opportunities to meet and talk with peers; (3) an alternative worldview that provides opportunities for members to participate and contribute; and (4) effective facilitators of community integration that provide opportunities to connect members to the community at large. The findings are discussed in terms of previous research in self‐help and consumer‐run organizations in mental health. © 2006 Wiley Periodicals, Inc.     

A longitudinal study of mental health consumer/survivor initiatives: Part 1—Literature review and overview of the study

Mental health consumer‐run organizations are alternatives to mainstream mental health services, and they have the dual focus of supporting members and creating systems change. The existing literature suggests that these organizations have beneficial impacts on social support, community integration, personal empowerment, subjective quality of life, symptom distress, utilization of hospitals, and employment/education. However, much of this research is cross‐sectional or retrospective and has not used comparison groups, thus limiting conclusions about the effectiveness of these organizations in improving the lives of members. Although many consumer‐run organizations also have a focus on social systems change, there has been little research documenting either the nature of these activities or the system changes that result from such activities. We provide an overview of a longitudinal study of four mental health Consumer/Survivor Initiatives. The study examines both individual‐level and systems‐level activities and impacts by using both quantitative and qualitative methods with a participatory action research framework. © 2006 Wiley Periodicals, Inc.     

A longitudinal study of mental health consumer/survivor initiatives: Part 2—A quantitative study of impacts of participation on new members

To evaluate the impacts of participation in mental health Consumer/Survivor Initiatives (CSIs), we used a nonequivalent control group design to compare new, active participants in CSIs ( n = 61) with nonactive participants ( n = 57) at baseline, 9‐month, and 18‐month follow‐up intervals. The two groups were comparable at baseline on a wide range of demographic variables, self‐reported psychiatric diagnosis, service use, and outcome measures. At 9 months, there was a significant reduction in utilization of emergency room services for active participants, but not for nonactive participants. At 18 months, the active participants showed significant improvement in social support and quality of life (daily activities) and a significant reduction in days of psychiatric hospitalization, whereas the nonactive participants did not show significant changes on these outcomes. Also, active CSI participants were significantly more likely to maintain their involvement in employment (paid or volunteer) and/or education over the 18‐month follow‐up period when compared with those who were not active in CSIs. These results are discussed in the context of the self‐help literature and their policy implications for people with mental illness. © 2006 Wiley Periodicals, Inc.     

A Longitudinal study of mental health consumer/survivor initiatives: Part 4—Benefits beyond the self? A quantitative and qualitative study of system‐level activities and impacts

The purpose of this article is to report on the system‐level findings of a longitudinal study of four mental health consumerñrun self‐help organizations. Quantitative and qualitative data revealed that staff and members of the four Consumer/Survivor Initiatives (CSIs) participated actively in system‐level activities, including community planning, public education, advocacy, and action research. The qualitative data revealed a number of perceived system‐level outcomes related to these activities: (1) changes in perceptions (changed perceptions of the public and mental health professionals about mental health or mental illness, the lived experience of consumer/survivors, the legitimacy of their opinions, and the perceived value of CSIs) and (2) concrete changes (tangible changes in service delivery practice, service planning, public policy, or funding allocations). These findings are discussed in the context of previous work on system‐level activities and impacts of consumer/survivor organizations. © 2006 Wiley Periodicals, Inc.     

Marfan syndrome: Evolving organ manifestations—A 10‐year follow‐up study

The age‐dependent penetrance of organ manifestations in Marfan syndrome (MFS) is not known. The aims of this follow‐up study were to explore how clinical features change over a 10‐year period in the same Norwegian MFS cohort. In 2003–2004, we investigated 105 adults for all manifestations in the 1996 Ghent nosology. Ten years later, we performed follow‐up investigations of the survivors (n = 48) who consented. Forty‐six fulfilled the revised Ghent criteria. Median age: females 51 years, range 32–80 years; males 45 years, range 30–67 years. New aortic root dilatation was detected in patients up to 70 years. Ascending aortic pathology was diagnosed in 93 versus 72% at baseline. Sixty‐five percent had undergone aortic surgery compared to 39% at baseline. Pulmonary trunk mean diameter had increased significantly compared to baseline. From inclusion to follow‐up, two patients (three eyes) developed ectopia lentis, four developed dural ectasia, four developed scoliosis, three developed incisional or recurrent herniae, and 14 developed hindfoot deformity. No changes were found regarding protrusio acetabuli, spontaneous pneumothorax, or striae atrophicae. The study confirms that knowledge of incidence and progression of organ manifestations throughout life is important for diagnosis, treatment, and follow‐up of patients with verified or suspected MFS.     

Fragile‐X syndrome – a 20‐year follow‐up study of male patients

In 1994, a multi‐professional team examined clinically 34 males with fragile X syndrome (FXS). Since then, these patients have been clinically evaluated twice at a 10‐year interval. With the aid of the Portage method we were able to chart the course of their adaptive skills. The FXS males learned new abilities on average up to the age of 25; this was followed by a plateau stage until they reached 50, after which time, physical symptoms evidencing weakened overall motor skills were apparent. During follow‐up, a total of 10 men died, 9 of them suddenly. Of these, three were under the age of 40 at death, and the oldest was 77. The FXS men were socially interactive, helpful, but shy. Typical symptoms of FXS boys such as poor eye contact, tactile defensiveness, and perseverative speech did not disappear with age. At the end of the study, 75% of the study subjects had long‐standing health problems. Most aged over 50 suffered from symptoms arising from an enlarged prostate; one fourth were on psychotropic‐, and one fifth on antiepileptic drug treatment.     

The effectiveness of single session therapy in child and adolescent mental health. Part 2: An 18‐month follow‐up study

Objectives . This study examines whether the short‐term benefits of planned single session therapy (SST), previously demonstrated for child and adolescent clients with mental health problems, are maintained over an 18‐month period. It also investigates the impact of an initial 6‐week delay on therapy, and the impact of additional therapy during the 18‐month period. Design . The study is an 18‐month follow‐up to a cross‐sectional clinical study involving treatment of outpatients at a public mental health clinic, over 14 months. All clients had been administered SST. Measures used were those used in the original study, which had a 1‐month post‐SST follow‐up. Method . Each client was assessed using the DSMD, CSQ‐8 and the frequency and severity of the major presenting problem. Analysis was performed using repeated measures t tests and one‐way repeated measures ANOVA. Results . The study found that the short‐term benefits of SST (measured 1‐month after therapy) were maintained 18 months after the initial consultation. Delay of treatment (by 6 weeks) did not appear to impact either the short‐term or longer‐term results. An additional finding was that about 60% of the group made significant clinical improvement after one session of therapy. In the other cases, one or more extra sessions were provided to consolidate change or maintain improvements. Conclusions . The previously demonstrated short‐term benefits of SST, for children and adolescents with a range of mental health problems, were shown to be maintained over an 18‐month period. However, some clients may benefit from booster sessions. Overall, SST appears to be an empirically supported, cost effective, and beneficial form of therapy for children and adolescents with mental health problems.     

Changes in sleep quality with age–a 36‐year follow‐up study of Finnish working‐aged adults

Long‐term follow‐up data on changes in sleep quality among middle‐aged adults is scarce. We assessed sleep quality in a population‐based cohort (n = 4847) of twins born between 1945 and 1957 during a follow‐up of 36 years, with four measurement points in 1975, 1981, 1990 and 2011. Sleep quality was categorized as sleeping well, fairly well, fairly poorly or poorly. The mean age at the beginning of follow‐up was 24.0, and at the end was 60.3 years. Of all the adults, 71.1% slept well or fairly well at each time‐point throughout the follow‐up and 0.5% poorly or fairly poorly. The proportion of those sleeping poorly or fairly poorly increased linearly over time; 3.5% among both sexes at the start, and 15.5% among men and 20.9% among women at the end of the follow‐up. The last survey indicated a strong association between self‐rated health and sleep quality: sleeping poorly or fairly poorly was reported 15 times more frequently by those rating their health as fairly poor than by those rating their health as very good. There was a strong association between indicators of depression and poor sleep. Although many studies have reported increasing frequencies in sleep problems, our results, based on a long‐term cohort study, indicate that the majority of people sleep well or fairly well. Sleep quality declines with age, but only a very small fraction of the adults in this long follow‐up consistently slept poorly.     

Down syndrome in adults: a 27‐year follow‐up of adaptive skills

In 1988, we assessed the adaptive skills of 45 adults with Down syndrome (DS) (21 women and 24 men, age 20–58) with the Portage scale. Since then, we have followed them and also screened for signs of clinical dementia with the Present Psychiatric State – Learning Disabilities assessment. The mean adaptive age (AA) of the study group decreased with increasing age; the age of 35 being the turning point in the clinical course of DS. The mean AA was 4.4 years between ages 20 and 34, 3.4 years between ages 35 and 49, and 2.4 years between ages 50 and 66. Inter‐individual variation was, however, large. Between ages 20 and 25, the AA of the study subjects ranged from 2.3 to 6 years; and after the age of 50, from 0.3 to 4.8 years. By the end of the study, all subjects showed signs of clinical dementia. These appeared most frequently as reduced self‐care skills, loss of energy, forgetfulness, and impaired understanding. We found no connection between apolipoprotein E genotype and the clinical course of DS. We recommend follow‐up of adaptive skills and screening for dementia signs in adults with DS.     

Postradical vaginal trachelectomy follow‐up by isthmic‐vaginal smear cytology: A 13‐year audit

Radical trachelectomy is a fertility preserving alternative for early cervical cancer patients. This audit assesses the role of isthmic‐vaginal smear in postoperative follow‐up. A total of 94 patients were identified generating 913 smears. The final surgical margin was at the lower uterine segment in 37 cases (39.4%) and significantly correlated with the presence of lower uterine segment endometrial cells (LUSEC) in smears (P = 0.035). The most common abnormal diagnoses in the presence of LUSEC were ASC‐US and AGUS seen in 14.2% and 11.9% of positive smears, respectively. The most common follow‐up pattern was initial positive smears, which converted to negative (45.7% of patients), showing that reactive changes are another potential overcall pitfall. The only 2 central recurrences were successfully diagnosed by smears. This study summarizes our experience, emphasizing the role of isthmic‐vaginal smears for early detection of central recurrence and highlighting the role of LUSEC and reactive changes as potential overcall pitfalls. Diagn. Cytopathol. 2009. © 2009 Wiley‐Liss, Inc.     

Multiple sleep latency test in narcolepsy type 1 and narcolepsy type 2: A 5‐year follow‐up study

Excessively sleepy teenagers and young adults without sleep‐disordered breathing are diagnosed with either narcolepsy type 1 or narcolepsy type 2, or hypersomnia, based on the presence/absence of cataplexy and the results of a multiple sleep latency test. However, there is controversy surrounding this nomenclature. We will try to find the differences between different diagnoses of hypersomnia from the results of the long‐term follow‐up evaluation of a sleep study. We diagnosed teenagers who had developed excessive daytime sleepiness based on the criteria of the International Classification of Sleep Disorders, 3rd edition. Each individual received the same clinical neurophysiologic testing every year for 5 years after the initial diagnosis of narcolepsy type 1 (n = 111) or type 2 (n = 46). The follow‐up evaluation demonstrated that narcolepsy type 1 (narcolepsy‐cataplexy) is a well‐defined clinical entity, with very reproducible clinical neurophysiologic findings over time, whereas patients with narcolepsy type 2 presented clear clinical and test variability. By the fifth year of the follow‐up evaluation, 17.6% of subjects did not meet the diagnostic criteria of narcolepsy type 2, and 23.9% didn't show any two sleep‐onset rapid eye movement periods in multiple sleep latency during the 5‐year follow‐up. Therefore narcolepsy type 1 (narcolepsy‐cataplexy) is a well‐defined syndrome, with the presentation clearly related to the known consequences of destruction of hypocretin/orexin neurons. Narcolepsy type 2 covers patients with clinical and test variability over time, thus bringing into question the usage of the term “narcolepsy” to label these patients.     

Increased risk for new‐onset hypertension in midlife male snorers: The 14‐year follow‐up study

While the association between sleep‐related breathing disorders such as snoring and hypertension has been well established, it still remains unclear whether the association differs by age and gender. Therefore, in this 14‐year follow‐up study, we examined the independent association between self‐reported snoring and the incidence of hypertension by gender and age groups in a large cohort of Korean adults. A total of 4,954 adults, aged 40–69 years, free of hypertension at baseline were enrolled. Participants were divided into three groups based on a self‐reported snoring frequency: never; occasional (snoring <4 nights per week); and habitual snorer (snoring ≥4 nights). At baseline and biennial follow‐up visits, blood pressure was measured by trained examiners. Incident hypertension was defined as the first occurrence at any follow‐up examination where the participants had blood pressure ≥140/90 mmHg or were being treated with antihypertensive medication. After adjusting for known cardiovascular risk factors, only in men aged ≤45 years was habitual snoring significantly associated with a 1.5 times higher risk for incident hypertension than never snoring. In this age group, habitual snoring was significantly associated with increased risk for the development of hypertension, regardless of the presence of excessive daytime sleepiness. In women, snoring was not significantly associated with hypertension incidence in any age group. The present study suggests that young male snorers may be at high risk for the future development of hypertension, which has important clinical implications for early detection and treatment of snoring to reduce the burden of cardiovascular disease.