scholarly journals Health-Related Quality of Life in Turner Syndrome and the Influence of Growth Hormone Therapy: A 20-Year Follow-Up

2019 ◽  
Vol 104 (11) ◽  
pp. 5073-5083 ◽  
Author(s):  
Emily Krantz ◽  
Kerstin Landin-Wilhelmsen ◽  
Penelope Trimpou ◽  
Inger Bryman ◽  
Ulla Wide
Keyword(s):  
Quality Of Life ◽  
Turner Syndrome ◽  
Reference Population ◽  
World Health ◽  
Health Related Quality ◽  
Gh Treatment ◽  
Related Quality ◽  
Health Related

Abstract Context The factors that affect the health-related quality of life (HRQoL) of women with Turner syndrome (TS) are controversial. Objective The aim was to describe the HRQoL of women with TS with a focus on how given GH treatment and comorbidity influence HRQoL in adulthood and to compare HRQoL of women with TS with that of women in the general population. Design Longitudinal cohort study, up to 20 years. Setting The Turner Center at the Section for Endocrinology and Department of Reproductive Medicine at Sahlgrenska University Hospital, Gothenburg, Sweden. Participants Women with TS (n = 200), age range 16 to 78 years, were included consecutively and monitored every fifth year between 1995 and 2018. Women from the World Health Organization MONItoring of trends and determinants for CArdiovascular disease project were used as reference populations. Interventions and Main Outcome Measures HRQoL was measured using the Psychological General Well-Being index and the Nottingham Health Profile. Associations with somatic variables were assessed using longitudinal linear regression models. Results HRQoL was not associated with GH treatment in TS in spite of a mean 5.7 cm taller height. HRQoL was only associated with height per se in one of 13 subscales (P < 0.01). HRQoL was negatively affected by higher age, higher age at diagnosis, and hearing impairment in TS. Women with TS reported a similar HRQoL to the reference population. Conclusions No association between previous GH treatment and HRQoL was found during the up to 20 years of follow-up in women with TS. HRQoL of women with TS and the reference population was similar.

scholarly journals P139 What impact does JIA have on health-related quality of life over time and by gender?

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Andrew Smith ◽  
Bishma Saqib ◽  
Rebecca Lee ◽  
Wendy Thomson ◽  
Lis Cordingley
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Child Health ◽  
Reference Population ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time ◽  
Domain Scores

Abstract Background Juvenile idiopathic arthritis (JIA) is a heterogeneous group of arthritic conditions presenting in children and young people, in which physical limitations and associated complications can have detrimental effects on physical and psychosocial wellbeing. This study aims to investigate the impact of living with JIA on different aspects of health-related quality of life (HRQoL) and to explore how this changes over time, using data from the Childhood Arthritis Prospective Study (CAPS). Methods Longitudinal data collected as part of CAPS were analysed. HRQoL was assessed at baseline, 1 year and 3 years’ post-diagnosis using the Child Health Questionnaire (CHQ), a parent-completed form for children from 5 years of age. The CHQ measures physical, emotional and social components of child health status. Raw domain scores were transformed via algorithm into values ranging from 0-100, with higher scores indicating better health status. Mean (standard deviation) and median (interquartile range) for each domain were determined, both for the full cohort and by gender. Differences between median scores at baseline and 3 years were assessed using the Wilcoxon signed-rank test. Mean scores of each domain were visually compared with a reference population sample of healthy children from the United States. Results 184 participants completed the questionnaire at all 3 time points. At baseline, compared to the reference population, children with JIA scored lower in every domain although scores were closer between the 2 groups at 3 years. Median scores improved over time, the exception being the general health perceptions domain which decreased after baseline. Domains with the greatest improvement were physical functioning,“bodily pain and social-physical. The largest changes occurred from baseline to 1 year. Statistically significant differences between baseline and 3-year scores were found for all domains. Domain scores for male and female participants were very similar at baseline, though scores for male participants indicated slightly better health at 1 and 3 years for both physical and psychosocial domains. Conclusion JIA has significant impact on HRQoL, which improves within 3 years of diagnosis with the greatest improvement occurring within the first year. Physical health domains show greater improvement over time than psychosocial domains, although psychosocial scores were generally higher throughout the study. Male participants tend to score slightly higher than female participants in both physical and psychosocial domains after baseline. Further research should explore measurable patient, age or disease-related drivers of HRQoL. Disclosures A. Smith None. B. Saqib None. R. Lee None. W. Thomson None. L. Cordingley None.

scholarly journals Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nina Tusa ◽  
Hannu Kautiainen ◽  
Pia Elfving ◽  
Sanna Sinikallio ◽  
Pekka Mäntyselkä
Keyword(s):  
Quality Of Life ◽  
Patient Care ◽  
Usual Care ◽  
Care Plan ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

scholarly journals Pelvic organ prolapse surgery and health-related quality of life: a follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Tadesse Belayneh ◽  
Abebaw Gebeyehu ◽  
Mulat Adefris ◽  
Guri Rortveit ◽  
Janne Lillelid Gjerde ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pelvic Organ Prolapse ◽  
Pelvic Organ ◽  
Prolapse Surgery ◽  
Stage Iii ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Background Symptomatic prolapse impairs quality of life. Health-related quality of life (HRQoL) is considered an important outcome of pelvic organ prolapse (POP) surgery. However, it is rarely reported, and measures are inadequately used. Thus, studies reporting patient-reported surgical outcomes in low-income contexts are needed. This study aims to evaluate the effect of prolapse surgery on patient HRQoL and determine the predictive factors for change in HRQoL. Methods A total of 215 patients who had prolapse stage III or IV were enrolled. Patients underwent vaginal native tissue repair, and their HRQoL was evaluated at baseline, 3 and 6 months postoperatively. Effect of surgery on subjective outcomes were measured using validated Prolapse Quality of Life (P-QoL-20), Prolapse Symptom Score (POP-SS), Body Image in Prolapse (BIPOP), Patient Health Questionnaire (PHQ-9), and Patient Global Index of Improvement (PGI-I) tools. A linear mixed-effect model was used to compare pre- and postoperative P-QoL scores and investigate potential predictors of the changes in P-QoL scores. Results In total, 193 (89.7%) patients were eligible for analysis at 3 months, and 185 (86.0%) at 6 months. Participant’s mean age was 49.3 ± 9.4 years. The majority of patients had prolapse stage III (81.9%) and underwent vaginal hysterectomy (55.3%). All domains of P-QoL improved significantly after surgery. Altogether more than 72% of patients reported clinically meaningful improvement in condition-specific quality of life measured with P-QoL-20 at 6 months. An improvement in POP-SS, BIPOP, and the PHQ-9 scores were also observed during both follow-up assessments. At 6 months after surgery, only 2.7% of patients reported the presence of bulge symptoms. A total of 97.8% of patients had reported improvement in comparison to the preoperative state, according to PGI-I. The change in P-QoL score after surgery was associated with the change in POP-SS, PHQ, BIPOP scores and marital status (p < 0.001). However, age, type of surgery, and prolapse stage were not associated with the improvement of P-QoL scores. Conclusions Surgical repair for prolapse effectively improves patient’s HRQoL, and patient satisfaction is high. The result could be useful for patient counselling on the expected HRQoL outcomes of surgical treatment. Surgical service should be accessible for patients suffering from POP to improve HRQoL.

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