A colleague was once to take part in a "care" conference for a quadriplegic man who had had one hospitalization after another, evidently due to frequent problems with infection. Some of the participants were clearly going to take the "enough is enough" stance. So he asked his colleagues to rate their own quality of life on a 1-10 scale. A resident or fellow gave himself a 6. My colleague found this puzzling; he was a physician, a married man, he was intelligent and in good health. Why a 6? Others gave themselves somewhat higher scores. When he asked the quadriplegic man the same question, his answer was 9. He took off one point only because of his current illness
"She doesn't value my life. She doesn't think I have a meaningful life, and a good life and a life I feel fulfilled in...I dealt with it. I'm here. I have an incredible life."
ReplyDeleteSee: http://rivkyderen.tumblr.com/ video entitled "if Shmuly was a carrier"
A searing segment of the film, "Heroes Against Their Will," shows Dr. Melamed-Cohen debating Dr. Noam Reches, the chairman of the Israel Medical Ethics Committee and a leading proponent of euthanasia, who himself has "pulled the plug" on request. Dr. Reches looks at the wheelchair-bound Dr. Melamed-Cohen, with the respirator tube connected to the tracheotomy in his neck, and says, "You can't feed yourself. You can't hug the people you love... If I were in your position, I'd want out."
ReplyDeleteDr. Melamed-Cohen responds, "These are the most beautiful and happiest years of my life."
"Some other ALS patients when they were fully conscious asked to end their lives," Dr. Reches continues. "They didn't want to reach your situation of complete dependence on others."
Dr. Melamed-Cohen gazes at Dr. Reches and declares, "Believe me, my life is no less interesting than yours."
All I could think of when viewing this scene was: He may not be able to hug people, but few of us with two functional arms actually embrace others with as much love and caring as Rahamim Melamed-Cohen.
http://www.aish.com/sp/pg/48960166.html
Fayed N, Davis AM, Streiner DL, Rosenbaum PL, Cunningham CE, Lach LM, Boyle MH, Ronen GM; QUALITÉ Study Group. Children's perspective of quality of life in epilepsy. Neurology. 2015 May 5;84(18):1830-7.
ReplyDeleteAbstract
OBJECTIVE:
To study child mental health, parental support, and social support of children with epilepsy as these relate to quality of life (QOL) using child self-report, seizure-related variables, and estimated verbal intelligence based on receptive vocabulary.
METHODS:
A cross-sectional structural equation model of baseline data from the QUALITÉ cohort study, which includes 6 Canadian child epilepsy ambulatory programs. A sample of 3,481 children were screened for the following eligibility: 8 to 14 years of age, with active or medication-managed epilepsy. Of 894 eligible children, 506 agreed to participate, of whom 26 were then excluded because of an inability to self-report based on a standard cutoff score of receptive vocabulary lower than 70. The primary outcome of child-reported QOL was measured using the Child Epilepsy QOL Questionnaire.
RESULTS:
From the child's perspective, epilepsy-specific QOL is strongly related to their mental health and social support but not to their seizures. Specifically, child mental health and peer support exhibit direct associations with QOL; parental support has both direct and indirect associations with QOL (via child mental health); estimated verbal intelligence exerts its strongest association with QOL through mental health; and seizure status exhibits a weak relationship to QOL only through mental health.
CONCLUSIONS:
Among children with epilepsy aged 8 to 14 years, mental health and social support should be areas of focus in the assessment of QOL. Controlling seizures is insufficient care for influencing the child's perception of their life.
Vranceanu AM, Merker VL, Park ER, Plotkin SR. Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature. J Neurooncol. 2015 Feb 7.
ReplyDeleteAbstract
The aim of this research is to identify, within a systematic review, aspects of quality of life (QoL) that are adversely affected in children and adolescents with neurofibromatosis (NF), and to report predictors of quality of life in this population. Published reports of original research were included if they described QoL in children and/or adolescents with NF, and met methodological quality according to a list of predefined criteria. Seven studies conducted between 2006 and 2013 met inclusion criteria. All seven studies examined patients with NF1 and reported that these patients have lower general QoL compared to population norms. Parents' proxy ratings of QoL were generally lower than children's self-report ratings. By parent proxy, familial NF1 was a strong protective factor for QoL, while the opposite was found by child report. By parent proxy, male sex was significantly associated with lower scores on the parental time impact of QoL. Skin-related QoL was only slightly altered in this population, and vision-specific QoL was impacted only in patients with bilateral blindness. The majority of findings regarding predictors of QoL in children with NF1 were weak, due to a lack of studies, heterogeneity of samples, and heterogeneity of measurements/predictors assessed. Future studies should examine more comprehensively the psychosocial factors affecting the NF population, especially in young patients with NF2 and schwannomatosis, who have been neglected in prior research. The use of consistent QoL measures is preferred to allow better comparison among studies and conditions. Interventions, including comprehensive mind-body treatments, are warranted to address impaired QoL in children and adolescents with NF1.
Puka K, Smith ML. Predictors of long-term quality of life after pediatric
ReplyDeleteepilepsy surgery. Epilepsia. 2015 May 4. doi: 10.1111/epi.13004. [Epub ahead of
print]
Abstract
Objective:This study examined the influence of seizures, antiepileptic drugs (AEDs), intelligence quotient (IQ), and symptoms of depression and anxiety on health-related quality of life (HRQOL) 4-11 years after pediatric epilepsy surgery.
Methods:
Participants were 109 patients with childhood-onset intractable epilepsy; 71 had undergone surgery on average 6.9 years before this study. Patients and their parents completed questionnaires assessing HRQOL and internalizing behavior, a measure of depression and anxiety symptoms.
Results:
Similar rates of recent seizure freedom were found for surgical and nonsurgical patients, although surgical patients had achieved seizure freedom sooner and with fewer AEDs. Few differences were found between surgical and nonsurgical patients. Differences emerged when comparing patients with continued seizures and those who had been seizure-free in the 12 months preceding the study. Almost all HRQOL ratings were enhanced in seizure-free patients. Internalizing behavior (anxiety/depression) mediated the relationship between seizure freedom and better HRQOL, where seizure freedom led to better ratings of anxiety/depression, which in turn led to better ratings of HRQOL. AED use was found to be associated with social functioning, medication effects, and seizure worry. IQ and duration of follow-up were not found to independently influence HRQOL.
Significance:
The findings highlight the integral role of depression and anxiety symptoms in determining HRQOL; seizure control seems to play a secondary role. This study expands this relationship to individuals who have a history of intractable childhood epilepsy. The findings highlight the importance of managing depression and anxiety in improving the HRQOL and reducing seizure burden on patients.