The impact of hand and knee osteoarthritis on quality of life: a comparison between the general population and the rheumatology outpatient clinic

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

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Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽

10.3390/cancers11101500 ◽

2019 ◽

Vol 11 (10) ◽

pp. 1500 ◽

Cited By ~ 1

Author(s):

Rebecca V. Steenaard ◽

Laura A. Michon ◽

Harm R. Haak

Keyword(s):

Quality Of Life ◽

General Population ◽

Adrenocortical Carcinoma ◽

Treatment Options ◽

Clinical Aspects ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

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Adult CHD patients under clinical follow-up have a similar quality of life to the general population in Malta

Cardiology in the Young ◽

10.1017/s1047951116001980 ◽

2016 ◽

Vol 27 (6) ◽

pp. 1051-1059

Author(s):

Maryanne Caruana ◽

Victor Grech

Keyword(s):

Quality Of Life ◽

Mental Health ◽

General Population ◽

Negative Impact ◽

Adult Survivors ◽

Cardiac Medication ◽

Self Reporting Questionnaire ◽

The Impact

AbstractBackgroundThe improved survival of patients born with CHD has led to increasing interest in research on quality of life of adult survivors. We report the findings of the first study in Malta carried out to investigate quality of life in adults with CHD under follow-up.MethodsA self-reporting questionnaire modelled on the basis of the European Health Interview Survey 2008, including questions on mental health and vitality, was administered to consecutive adult CHD outpatients, aged 16 years and over, between May, 2013 and May, 2014. Foreigners and patients with learning difficulties or cognitive impairment were excluded. Quality-of-life data were compared with that from 371 age- and sex-matched 2008 survey responders – general population cohort. The impact of congenital lesion complexity, hospitalisation in the preceding 12 months, arrhythmias, co-morbidities, and cardiac medication use on quality of life of the CHD cohort was also investigated.ResultsThere were a total of 120 patient responders (63 males; mean age 30.53, SD 12.77 years). Overall, there were no significant differences in mental health and vitality between patient and general population cohorts, although older patients had better mental health scores compared with age-matched controls. Within the adult CHD cohort, hospitalisation in the preceding 12 months was the only factor associated with a poorer quality of life.ConclusionsOverall, CHD has no negative impact on mental health and vitality in Maltese adult patients under follow-up. Patients needing frequent hospitalisations might warrant closer attention by clinical psychologists.

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Health-Related Quality of Life and Mental Health in Primary Aldosteronism: A Systematic Review

Hormone and Metabolic Research ◽

10.1055/s-0043-121706 ◽

2017 ◽

Vol 49 (12) ◽

pp. 943-950 ◽

Cited By ~ 8

Author(s):

Marieke Velema ◽

Aline de Nooijer ◽

Vivian Burgers ◽

Ad. Hermus ◽

Henri Timmers ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

General Population ◽

Primary Aldosteronism ◽

Health Related Quality ◽

Inclusion Criteria ◽

Related Quality ◽

Health Related ◽

The Impact

AbstractThe aim of this review was to determine the impact of primary aldosteronism on health-related quality of life (HRQoL) and mental health. We performed a systematic literature search up to July 2017 in six electronic databases. First, we screened the articles derived from this search based on title and abstract. Second, the selected studies were systematically reviewed and checked for our predefined inclusion criteria. The search yielded 753 articles, of which 15 studies met our inclusion criteria. Untreated patients with primary aldosteronism showed an impaired physical and mental HRQoL as compared to the general population. Multiple domains of HRQoL were affected. This applied to patients with both an aldosterone-producing adenoma and bilateral adrenal hyperplasia. Adrenalectomy improves HRQoL. Conflicting results have been reported on the extent of this improvement, the improvement after initiation of medical treatment, and whether there is a difference in HRQoL after both treatments. Similarly, psychopathological symptoms of anxiety, demoralization, stress, depression and nervousness were more frequently reported in untreated patients with primary aldosteronism than in the general population and patients with hypertension. Also an impaired sleep quality has been reported. Improvement of these symptoms was observed after treatment with both adrenalectomy and mineralocorticoid receptor antagonists. This review shows that HRQoL is impaired and psychopathology is more frequently reported in patients with primary aldosteronism. This seems to be at least partly reversible after treatment but the extent of improvement remains unknown. To assess HRQoL in these patients more precisely a primary aldosteronism-specific HRQoL questionnaire is required.

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The impact of job status on quality of life: general population versus long-term cancer survivors

Psycho-Oncology ◽

10.1002/pon.3828 ◽

2015 ◽

Vol 24 (11) ◽

pp. 1552-1559 ◽

Cited By ~ 7

Author(s):

Seo Yoon Lee ◽

Sun Jung Kim ◽

Jaeyong Shin ◽

Kyu-Tae Han ◽

Eun-Cheol Park

Keyword(s):

Quality Of Life ◽

General Population ◽

Cancer Survivors ◽

Job Status ◽

The Impact

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Predictors of Quality of Life after Liver Transplant

Proceedings of IMPRS ◽

10.18060/23636 ◽

2019 ◽

Vol 2 (1) ◽

Author(s):

Joey Wu ◽

Archita Desai, MD

Keyword(s):

Quality Of Life ◽

Liver Disease ◽

General Population ◽

Liver Transplant ◽

Liver Diseases ◽

Chronic Liver ◽

University Hospital ◽

Chronic Liver Diseases ◽

The Impact

Background and Hypothesis: The impact of chronic liver diseases on patients and their family member is often understated and understudied. Chronic liver diseases can sometimes progress to a need for Liver transplant (LT). While recent studies have described quality of life (QOL) at different stages of liver disease, the impact of the patient’s QOL in LT survivors has not been examined. The importance of studying QOL in patients is due to its effect on the survivorship of LT recipients. We hypothesize that QOL in LT patients is lower than the general population. Our aim was to describe predictors of QOL in a well-described cohort of LT patients. Methods: Patients were enrolled at the Digestive and Liver Disease Liver clinic at Indiana University Hospital. All patients over the age of 18 were approached, if patients consented to the study, they were then enrolled during their liver follow up visit. The PROMIS survey was administered on an iPad and completed during the clinic visit. Survey were then scored and analyzed. Results: The T-scores for post liver transplant patients are lower in physical function, anxiety and depression, but higher in general life satisfaction compared to the general population. LT recipients have similar T-scores in Fatigue, Sleep disturbance, ability to participate in social activities, and pain interference compared to the general population. Conclusion and Potential Impact: Previous diagnosis of PBC, HCC, diagnosis of depression, household income, insurance status, Charlson Comorbid Index and number of non-transplant related medications have the highest association with quality of life. Further enrollment is needed to increase the power of the study. However, this can inform physicians the importance to taking these factors in to consideration in order to improve the QOL in LT recipients.

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The impact of pseudophakia on vision-related quality of life in the general population – The Gutenberg Health Study

Aging ◽

10.18632/aging.101208 ◽

2017 ◽

Vol 9 (3) ◽

pp. 1030-1040 ◽

Cited By ~ 10

Author(s):

Alexander K. Schuster ◽

Norbert Pfeiffer ◽

Andreas Schulz ◽

Stefan Nickels ◽

René Höhn ◽

...

Keyword(s):

Quality Of Life ◽

General Population ◽

Health Study ◽

Gutenberg Health Study ◽

Related Quality ◽

The Impact

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Health-related Quality of Life in Patients with Hand Osteoarthritis from the General Population and the Outpatient Clinic

The Journal of Rheumatology ◽

10.3899/jrheum.190781 ◽

2019 ◽

Vol 47 (9) ◽

pp. 1409-1415

Author(s):

Marieke Loef ◽

Wendy Damman ◽

Renée de Mutsert ◽

Frits R. Rosendaal ◽

Margreet Kloppenburg

Keyword(s):

Quality Of Life ◽

General Population ◽

Outpatient Clinic ◽

Hand Osteoarthritis ◽

Health Related Quality ◽

Knee Oa ◽

Related Quality ◽

Health Related ◽

Mental Hrqol

Objective.To investigate the association of hand osteoarthritis (OA) and concurrent hand and knee OA with health-related quality of life (HRQOL) in the general population, and in patients consulting a rheumatology outpatient clinic.Methods.In the population-based Netherlands Epidemiology of Obesity (NEO) study, participants were recruited from the greater area of Leiden, the Netherlands. In the Hand OSTeoArthritis in Secondary care (HOSTAS) study, patients with a rheumatologist’s diagnosis of hand OA were recruited from a Leiden-based hospital. In both cohorts, hand and knee OA were defined by the American College of Rheumatology clinical criteria. In NEO, self-reported hospital-based specialist consultation for OA was recorded. Physical and mental HRQOL was assessed with normalized Medical Outcomes Study Short Form-36 scores. Associations were analyzed using linear regression, adjusted for age, sex, education, ethnicity, and body mass index.Results.Hand OA alone and concurrent hand and knee OA was present in 8% and 4% of 6334 NEO participants, and in 57% and 32% of 538 HOSTAS patients. In NEO, hand OA alone, and concurrent hand and knee OA, were associated with lower physical component summary (PCS) scores [mean difference −2.4 (95% CI −3.6, −1.3) and −7.7 (95% CI −9.3, −6.2), respectively] compared with no OA. Consulting a specialist was associated with worse PCS scores. In the HOSTAS cohort, mean PCS scores were lower than norm values (−3.5 and −7.9 for hand OA and combined OA, respectively). Mental HRQOL was not clinically relevantly associated in either cohort.Conclusion.Hand OA was associated with reduced physical, but not mental, HRQOL in the general population and hospital patients. Physical HRQOL was further reduced in hospital care, and with concurrent knee OA.

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