Current subjective state of health, and longitudinal psychological well-being over a period of 10 years, in a cohort of adults with congenital cardiac disease

2005 ◽  
Vol 15 (2) ◽  
pp. 168-175 ◽  
Author(s):  
Elisabeth H. M. van Rijen ◽  
Elisabeth M. W. J. Utens ◽  
Jolien W. Roos-Hesselink ◽  
Folkert J. Meijboom ◽  
Ron T. van Domburg ◽  
...  
Keyword(s):  
Cardiac Disease ◽  
Bodily Pain ◽  
Well Being ◽  
State Of Health ◽  
Psychological Well Being ◽  
Subjective State ◽  
Female Patients ◽  
Congenital Cardiac Disease ◽  
Psychological Examination

Objective: To examine the current subjective state of health, and the longitudinal course of psychological well-being, in adult patients with congenital cardiac malformations. Methods: Our study concerns the second follow-up of a cohort of patients with congenital cardiac malformations. We examined 362 consecutive patients, aged from 20 to 46 years, who underwent surgical procedures for treatment of congenital cardiac disease between 1968 and 1980, specifically for treatment of atrial and ventricular septal defects, tetralogy of Fallot, transposition, and pulmonary stenosis. The patients were submitted to extensive medical and psychological examination. During psychological examination, in which all patients were seen by the same psychologist (EvR), patients filled in questionnaires concerning their current subjective state of health, using the 36-item Short Form Health Survey (SF-36), and psychological well-being, answering the Heart Patients Psychological Questionnaire. The data we acquired at their first follow-up was used to measure the longitudinal course of psychological well-being over the intervening period of 10 years. Results: When compared to a reference group, the patients assessed their state of health less favourably concerning physical functioning, but more favourable with regard to social functioning, bodily pain, and limitations of role due to emotional problems. Younger female patients reported more limitations of role due to physical functioning than did the female patients who were older. Patients with transposition showed a negative trend for their subjective state of health, but reported the least bodily pain. Within the overall group of patients, displeasure had increased, while social inhibition had decreased, over the intervening period of 10 years. Conclusion: Extra attention should be paid to the subjective experiences of young female patients with congenital cardiac disease. The patients with transposed arterial trunks seem overall to experience poorer physical health.

Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?

2010 ◽  
Vol 20 (S3) ◽  
pp. 143-148 ◽  
Author(s):  
Philip Moons
Keyword(s):  
Quality Of Life ◽  
Cardiac Disease ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Main Question ◽  
Congenital Cardiac Disease ◽  
Patient Reported ◽  
Satisfaction With Treatment

AbstractPatient-reported outcomes are “any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources”. Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.

scholarly journals Symptoms, unmet needs, psychological well-being and health status in survivors of prostate cancer: implications for redesigning follow-up

2015 ◽  
Vol 117 (6B) ◽  
pp. E10-E19 ◽  
Author(s):  
Eila Watson ◽  
Bethany Shinkins ◽  
Emma Frith ◽  
David Neal ◽  
Freddie Hamdy ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Health Status ◽  
Unmet Needs ◽  
Well Being ◽  
Psychological Well Being

Thoracoscopic Sympathectomy for Hyperhidrosis

Neurosurgery ◽  
2010 ◽  
Vol 67 (3) ◽  
pp. 652-657 ◽  
Author(s):  
Scott D. Wait ◽  
Brendan D. Killory ◽  
Gregory P. Lekovic ◽  
Francisco A. Ponce ◽  
Kathy J. Kenny ◽  
...  
Keyword(s):  
Hospital Stay ◽  
Well Being ◽  
Sympathetic Chain ◽  
Horner’S Syndrome ◽  
Compensatory Sweating ◽  
Horner's Syndrome ◽  
Thoracoscopic Sympathectomy ◽  
Safe Treatment ◽  
Female Patients

Abstract BACKGROUND Hyperhidrosis (HH) profoundly affects a patient's well-being. OBJECTIVE We report indications and outcomes of 322 patients treated for HH via thoracoscopic sympathectomy or sympathotomy at the Barrow Neurological Institute. METHODS A prospectively maintained database of all patients who underwent sympathectomy or sympathotomy between 1996 and 2008 was examined. Additional follow-up was obtained in clinic, by phone, or by written questionnaire. RESULTS A total of 322 patients (218 female patients) had thoracoscopic treatment (mean age 27.6 years; range, 10–60 years). Mean follow-up was 8 months. Presentations included HH of the palms (43 patients, 13.4%), axillae (13 patients, 4.0%), craniofacial region (4 patients, 1.2%), or some combination (262 patients, 81.4%). Sympathectomy and sympathotomy were equally effective in relieving HH. Palmar HH resolved in 99.7% of patients. Axillary or craniofacial HH resolved or improved in 89.1% and 100% of cases, respectively. Hospital stay averaged 0.5 days. Ablating the sympathetic chain at T5 increased the incidence of severe compensatory sweating (P = .0078). Sympathectomy was associated with a significantly higher incidence of Horner's syndrome compared with sympathotomy (5% vs 0.9%, P = .0319). Patients reported satisfaction and willingness to undergo the procedure again in 98.1% of cases. CONCLUSION Thoracoscopic sympathectomy is effective and safe treatment for severe palmar, axillary, and craniofacial HH. Ablating the T5 ganglion tends to increase the severity of compensatory sweating. Sympathectomy led to a higher incidence of ipsilateral Horner's syndrome compared with sympathotomy.

The impact of actual and perceived disease severity on pre-operative psychological well-being and illness behaviour in adult congenital heart disease patients

2013 ◽  
Vol 24 (2) ◽  
pp. 275-282 ◽  
Author(s):  
Edward Callus ◽  
Elisabeth M. W. J. Utens ◽  
Emilia Quadri ◽  
Cristian Ricci ◽  
Mario Carminati ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Disease Severity ◽  
Cardiac Disease ◽  
Congenital Heart ◽  
Well Being ◽  
Illness Behavior ◽  
Psychological State ◽  
Illness Behaviour ◽  
Psychological Well Being

AbstractObjectives: The purpose of this study was to investigate whether the objective medical parameters related to congenital heart disease and patients’ ratings of cardiac disease severity were related to psychological well-being and illness behaviour during the pre-operative period.Methods: A total of 143 patients (63 male patients; 16–73 years old) with congenital heart disease evaluated the severity of their cardiac condition using a numerical rating scale ranging from 0, indicating the least severe condition, to 100, indicating the most severe condition. Psychological well-being was assessed using the Psychological General Well-Being Index (total score ≤60 indicating severe distress) and illness behaviour using the Illness Behavior Questionnaire.Results: Pre-operative psychological well-being was not related to the objective medical parameters reflecting cardiac disease severity. In contrast, total psychological well-being scores correlated significantly with patients’ subjective ratings of disease severity (p < 0.001). When compared with the reference values from the Italian population, the mean scores of the patients on psychological well-being were similar. As regards the Illness Behavior Questionnaire, the scores on denial were higher and those on hypochondria were lower compared with other hospitalised patients.Conclusions: This study shows that the perception of cardiac disease severity, and not the medical parameters in congenital heart disease, is related to the patients’ pre-operative psychological state. Thus, more importance needs to be given to assessing the patients’ pre-operative perception and psychological state independently of cardiac severity. Targeted interventions with regard to the cardiac condition are recommended.

Psychological Well-Being as an Additional Outcome Parameter in the Treatment of Patients with Gambling Disorder: Results from a Clinical Multicenter Follow-Up Study

2016 ◽  
Vol 18 (4) ◽  
pp. 1045-1059
Author(s):  
Kai W. Müller ◽  
Lisa Naab ◽  
Klaus Wölfling ◽  
Manfred E. Beutel ◽  
Ulrike Dickenhorst ◽  
...  
Keyword(s):  
Gambling Disorder ◽  
Well Being ◽  
Outcome Parameter ◽  
Psychological Well Being ◽  
Follow Up Study

5 Year Results of BMT CTN 0201: Unrelated Donor Bone Marrow Is Associated with Better Psychological Well-Being and Less Burdensome Chronic Gvhd Symptoms Than Peripheral Blood

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 270-270 ◽  
Author(s):  
Stephanie J. Lee ◽  
Brent Logan ◽  
Peter Westervelt ◽  
Corey S Cutler ◽  
Ann E Woolfrey ◽  
...  
Keyword(s):  
Bone Marrow ◽  
Peripheral Blood ◽  
Chronic Gvhd ◽  
Well Being ◽  
Unrelated Donor ◽  
Symptom Scale ◽  
Psychological Well Being ◽  
Donor Bone Marrow ◽  
Patient Reported

Abstract BMT CTN 0201 was a randomized study of unrelated donor bone marrow (BM) vs. peripheral blood (PB) (N=551) in hematopoietic cell transplantation (HCT) for hematologic malignancies. The primary analysis after 2 years of follow up showed similar survival, disease-free survival and treatment-related mortality between the graft types. There was a higher rate of graft failure with bone marrow (9% vs. 3%, p=0.002) and a higher rate of chronic GVHD with peripheral blood (53% vs. 41%, p=0.01). (Anasetti et al, NEJM 2012) Patient reported outcomes (PROs) were collected from patients > 16 years old at enrollment and 0.5, 1, 2 and 5 years after transplantation with the Functional Assessment of Cancer Therapies - Bone Marrow Transplant (FACT-BMT), Mental Health Inventory (MHI), and Lee chronic graft-versus-host disease (cGVHD) symptom scale. At 5 years, 102 BM and 93 PB participants were alive and eligible for the quality of life (QOL) study. Clinically meaningful differences (changes in scores that are noticeable to patients) were considered 0.5 x standard deviation of the total population based on the distribution method. Results: Data as of 5/25/15 were analyzed. 70% completed the pre-randomization assessment, and 74-78% of adult survivors completed the 5 year assessment. Age < 30 at transplant and high risk disease were associated with missing 5 year data, but not graft source. Response rates at 0.5, 1 and 2 years were 28-43% of survivors. There are no differences in any of the primary QOL scores in the first two years after HCT using univariate comparisons, although missing data severely limit conclusions during this period. At 5 years, the FACT-Trial Outcome Index (TOI), the MHI Psychological Well-Being, and the cGVHD symptom scale scores are all significantly better for BM patients, although only the latter two are still significant after adjustment for multiple testing (p<0.0125 because of 4 primary QOL variables). Results were similar when tested in multivariate models adjusting for baseline patient-reported scores and also imputing missing values based on patient characteristics (Table). Of the 7 chronic GVHD subscales, symptoms in the eye, lung, and energy were significantly better with BM (p<0.01). A diagnosis of cGVHD was highly associated with patient-reported cGVHD symptoms but not with QOL or psychological status. Inclusion of extensive cGVHD in the multivariate models did not change the significance of PRO differences suggesting that differences in cGVHD incidence do not explain the PRO findings. With a median follow up of 73 months for survivors, no difference in survival between PB and BM is observed (p=0.84, Figure). Conclusion: At 5 years after transplant, recipients of unrelated donor BM have better psychological well-being and less burdensome chronic GVHD symptoms than recipients of PB. Survival rates are similar. Table. Comparisons of primary QOL variables at 5 years, adjusted for QOL values at baseline and missing data using inverse probability weighting using significant clinical characteristics. QOL scale Bone marrow (n=102) Peripheral blood (n=93) P value Clinically significant difference* Difference between BM and PB (95% CI) FACT-BMT TOI, mean +/- SE (higher scores better) 76.7 +/- 1.6 (n=79) 70.5 +/- 1.9 (n=69) 0.014 8.5 6.2 (1.3-11.1) MHI - Psychological well-being, mean +/- SE (higher scores better) 78.9 +/- 1.7 (n=80) 72.2 +/- 1.9 (n=72) 0.011 8.4 6.7 (1.6-11.8) MHI-Psychological Distress, mean +/- SE (lower scores better) 16.0 +/- 1.3 (n=80) 19.0 +/- 1.5 (n=71) 0.128 6.5 -3.0 (-6.8,0.9) Chronic GVHD symptoms, mean +/- SE (lower scores better) 13.1 +/- 1.5 (n=80) 19.3 +/- 1.6 (n=72) 0.004 7.1 -6.3 (-10.5, -2.0) SE, standard error *0.5 x STD Figure 1. Figure 1. Disclosures Lee: Bristol-Myers Squibb: Consultancy; Kadmon: Consultancy. Maziarz:Athersys: Consultancy, Patents & Royalties, Research Funding; Novartis: Consultancy.

Psychological Well-Being, Health Behaviors, and Weight Loss Among Participants in a Residential, Kripalu Yoga-Based Weight Loss Program

2012 ◽  
Vol 22 (1) ◽  
pp. 9-22 ◽  
Author(s):  
Tosca Braun ◽  
Crystal Park ◽  
Lisa Ann Conboy
Keyword(s):  
Weight Loss ◽  
Health Behaviors ◽  
Well Being ◽  
The United States ◽  
Overweight And Obesity ◽  
Weight Loss Program ◽  
Health Concern ◽  
Psychological Well Being ◽  
The Impact

The increasing prevalence of overweight and obesity in humans is a growing public health concern in the United States. Concomitants include poor health behaviors and reduced psychological well-being. Preliminary evidence suggests yoga and treatment paradigms incorporating mindfulness, self-compassion (SC), acceptance, non-dieting, and intuitive eating may improve these ancillary correlates, which may promote long-term weight loss. Methods: We explored the impact of a 5-day residential weight loss program, which was multifaceted and based on Kripalu yoga, on health behaviors, weight loss, and psychological well-being in overweight/obese individuals. Thirty-seven overweight/obese program participants (age 32-65, BMI&lt;25) completed validated mind-fulness, SC, lifestyle behavior, and mood questionnaires at baseline, post-program, and 3-month follow-up and reported their weight 1 year after program completion. Results: Significant improvements in nutrition behaviors, SC, mindfulness, stress management, and spiritual growth were observed immediately post-program (n = 31, 84% retention), with medium to large effect sizes. At 3-month follow-up (n = 18, 49% retention), most changes persisted. Physical activity and mood disturbance had improved significantly post-program but failed to reach significance at 3-month follow-up. Self-report weight loss at 1 year (n = 19, 51% retention) was significant. Conclusion: These findings suggest a Kripalu yoga-based, residential weight loss program may foster psychological well-being, improved nutrition behaviors, and weight loss. Given the exploratory nature of this investigation, more rigorous work in this area is warranted.

Advanced cancer patients’ changes in terminal illness understanding (TIU) and their psychological well-being.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11617-11617
Author(s):  
Login S. George ◽  
Megan Johnson Shen ◽  
Paul K. Maciejewski ◽  
Andrew S. Epstein ◽  
Holly Gwen Prigerson
Keyword(s):  
Life Expectancy ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Psychological Symptoms ◽  
Treatment Decision ◽  
Well Being ◽  
Advanced Cancer Patients ◽  
Psychological Well Being ◽  
Change Scores

11617 Background: Although accurate TIU is necessary for informed treatment decision-making, clinicians worry that patients’ recognition of the terminal nature of their illness may lower psychological well-being. This study examines if such recognition is associated with lowered psychological well-being, that persists over time. Methods: Data came from 87 advanced cancer patients, with a life expectancy of less than 6 months. Patients were assessed pre and post an oncology visit to discuss cancer restaging scan results, and again one month later (follow-up). TIU was assessed at pre and post as the sum of four indicator variables — understanding of terminal nature of illness, curability, stage, and life-expectancy — and a TIU change score was computed (post minus pre). Psychological well-being (psychological symptoms subscale, McGill questionnaire) was assessed at pre, post, and follow-up, and two change scores were computed (post minus pre; follow-up minus post). Results: Changes toward more accurate TIU was associated with a corresponding decline in psychological well-being ( r = -0.33, p < .01), but thereafter was associated with subsequent improvements in psychological well-being ( r = .40, p < .001). This pattern persisted even after adjustment for relevant demographic factors, prognostic discussion, scan results, and physical well-being change. TIU change scores ranged from positive to negative, with some participants showing improvements in TIU ( n = 19), some showing decrements in TIU ( n = 14), and others showing stable TIU ( n = 54). Among patients with improved TIU, psychological well-being initially decreased, but subsequently recovered [7.03 (2.23) to 6.30 (1.80), to 7.63 (2.08)]; the stable TIU group showed relatively unchanged well-being [7.34 (2.37) to 7.45 (2.32), to 7.36 (2.66)], and the less accurate TIU group showed an initial improvement followed by a subsequent decline [6.30 (2.62) to 7.36 (2.04), to 5.63 (3.40)]. Conclusions: Improved TIU may be associated with initial decrements in psychological well-being, followed by patients rebounding to baseline levels. Concerns about psychological harm may not need to be a deterrent to having prognostic discussions with patients.

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