Aims
Heart failure (HF) leads to repeat hospitalisations and reduces the duration and quality of life. Pulmonary artery pressure (PAP)‐guided HF management using the CardioMEMS™ HF system was shown ...to be safe and reduce HF hospitalisation (HFH) rates in New York Heart Association (NYHA) class III patients. However, these findings have not been replicated in health systems outside the United States. Therefore, the CardioMEMS European Monitoring Study for Heart Failure (MEMS‐HF) evaluated the safety, feasibility, and performance of this device in Germany, The Netherlands, and Ireland.
Methods and results
A total of 234 NYHA class III patients (68 ± 11 years, 22% female, ≥1 HFH in the preceding year) from 31 centres were implanted with a CardioMEMS sensor and underwent PAP‐guided HF management. One‐year rates of freedom from device‐ or system‐related complications and from sensor failure (co‐primary outcomes) were 98.3% 95% confidence interval (CI) 95.8–100.0 and 99.6% (95% CI 97.6–100.0), respectively. Survival rate was 86.2%. For the 12 months post‐ vs. pre‐implant, HFHs decreased by 62% (0.60 vs. 1.55 events/patient‐year; hazard ratio 0.38, 95% CI 0.31–0.48; P < 0.0001). After 12 months, mean PAP decreased by 5.1 ± 7.4 mmHg, Kansas City Cardiomyopathy Questionnaire (KCCQ) overall/clinical summary scores increased from 47.0 ± 24.0/51.2 ± 24.8 to 60.5 ± 24.3/62.4 ± 24.1 (P < 0.0001), and the 9‐item Patient Health Questionnaire sum score improved from 8.7 ± 5.9 to 6.3 ± 5.1 (P < 0.0001).
Conclusion
Haemodynamic‐guided HF management proved feasible and safe in the health systems of Germany, The Netherlands, and Ireland. Physician‐directed treatment modifications based on remotely obtained PAP values were associated with fewer HFH, sustainable PAP decreases, marked KCCQ improvements, and remission of depressive symptoms.
Background
Presently, no validated data exist on symptom severity and disease‐specific quality‐of‐life (QoL) for patients with mastocytosis. Simultaneously, clinical trials and drug application ...processes increasingly mandate reporting patients’ perspectives on symptoms and QoL. We report on the development and validation of the mastocytosis quality‐of‐life questionnaire (MQLQ) and the mastocytosis symptom assessment form (MSAF).
Methods
Both outcome measures were developed in a standardized stepwise method, starting with the identification of items in focus groups (n = 12), item reduction and subsequent cross‐sectional validation in a 63% female cohort of 164 adult patients with indolent systemic mastocytosis.
Results
The MSAF reveals that fatigue is the severest mastocytosis symptom while the MQLQ indicates that fear of anaphylaxis mostly impacts QoL. Cross‐sectional validity was assessed by correlating both individual domains and the total scores of the MQLQ and MSAF with independent measures of mastocytosis. The total scores of both the MQLQ (P < 0.001; Spearman's r: 0.568) and the MSAF (P < 0.001; Spearman's r: 0.559) correlated significantly with the consensus on physician‐scored mediator symptoms. The MQLQ domains displayed a high internal consistency (Cronbach's alpha: 0.841–0.958) and the domains ‘bones’, ‘skin symptoms’ and ‘anaphylaxis’ differed significantly between patients with and without osteoporosis, urticaria pigmentosa or anaphylaxis, respectively (P < 0.001).
Conclusions
The MQLQ is the first disease‐specific QoL questionnaire for mastocytosis and is complemented by the MSAF, a short and convenient symptom scoring form. Both patient‐reported outcome measures are valid, reliable and discriminate between patients with different disease characteristics, making them useful instruments for clinical research.
The aim of the study was to compare the inter-rater reliability, concurrent validity, completion time, and ease of use of two methodological quality (MQ) assessment tools for cross-sectional studies: ...an adapted Newcastle–Ottawa Scale (NOS) and the Appraisal Tool for Cross-Sectional Studies (AXIS).
Two raters applied the NOS and AXIS to 63 cross-sectional studies of health-related quality of life and breast cancer.
AXIS demonstrated poor inter-rater reliability (intraclass correlation coefficient ICC = 0.49) and required more than double the amount of time to complete compared with the NOS, which demonstrated moderate reliability (ICC = 0.73). For concurrent validity, weak and moderate positive relationships existed between NOS and AXIS (rater 1: r = 0.26; rater 2: r = 0.45). Ease of using the tools was affected by the indirectness of MQ assessments, perceived thoroughness of the tools’ content, and user experience.
This study was the first to assess the psychometric properties of a cross-sectional NOS and AXIS. The results did not support a clear choice between selecting either tool for evaluating MQ in cross-sectional studies.
Background
Quality of life is a phenomenon that recently required lots of concern, especially for older adults, since healthy aging and longevity have become the focus in life. Most research on the ...quality of life addresses certain issues of older people having special diseases, health problems, and disorders. Our research is based on holistic quality of life empowering multiple areas of life/domains of older adults without addressing their diseases or health disorders.
Aim
Our research aims at evaluating the quality of life of the research participants (older people), addressing their problematic areas and suggestions for better quality of life.
Methods
The conducted research implied mixed methods as quantitative survey and reflection based on interviews. We chose participants from the III age university and the ongoing project “Healthy Aging Program”.
Results
The research results showed the lowest ratings for emotional and physical health and the highest rating for social health. Also, older adults tend to avoid specifying precise measures to improve their quality of life and demonstrate a more conservative stance regarding the implementation of more radical changes in improving water consumption, exercising, meal planning, and enhancing psychosocial well-being.
Conclusions
The overall quality of life rating was lower than the average. Older adults are not sufficiently prepared or educated to make significant changes to develop healthier habits in their quality-of-life improvement, though, they demonstrate concern about their quality of life.
Purpose For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial ...challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment. Methods MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures (PROMs) were extracted. Results 166 papers were reviewed in full and comprised 72 papers covering 69 primary studies, 49 measurement development or evaluation papers and 45 reviews. Of the 69 studies reviewed, 11 (16%) used interviews to elicit AYAs' descriptions of HRQoL issues. The majority of the PROMs used in the studies represent adaptations of paediatric or adult measures. HRQoL issues were organised into the following categories: physical, cognitive, restricted activities, relationships with others, fertility, emotions, body image and spirituality/outlook on life. Conclusion The HRQoL issues presented within this review are likely to be informative to health care professionals and AYAs. The extensive list of issues suggests that the impact of a cancer diagnosis and treatment during adolescence and young adulthood is widespread and reflects the complexities of this developmental phase.
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