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Health-related quality of life and functional changes in DMD: A 12-month longitudinal cohort study.

ABSTRACT: In Duchenne muscular dystrophy (DMD) little has been reported on the association between clinical outcome measures and patient health-related quality of life (HRQOL) tools. Our study evaluated the relationship between 12 month changes on the Generic Core Scales (GCS), the Multidimensional Fatigue Scale and the Neuromuscular Module of the PedsQL(TM) with several outcome measures (6 minute walk test, North Star Ambulatory Assessment and timed items) in ambulatory DMD. Ninety-eight ambulatory DMD in a multicentric setting were included in the study. At baseline, the PedsQL(TM) inventories correlated with almost all the functional measures On the Child Self-Report there was a significant decrease between baseline and 12 months on the PedsQL(TM) GCS and its first domain, in parallel with the decrement in the functional outcome measures. Correlation between the 12 month changes on the PedsQL(TM) inventories and functional measures were almost all negligible. Similar results were obtained on the Parent Proxy-Report. In conclusion, PedsQL(TM) correlates with the level of impairment at baseline, but this does not hold true when 12 month changes are considered. Further studies comparing different tools are needed to better elucidate the complexity of the relationship between HRQOL and functional performances.

SUBMITTER: Messina S

PROVIDER: S-EPMC4819956 | biostudies-other | 2016 Mar

REPOSITORIES: biostudies-other

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Health-related quality of life and functional changes in DMD: A 12-month longitudinal cohort study.

Messina Sonia S Vita Gian Luca GL Sframeli Maria M Mondello Stefania S Mazzone Elena E D'Amico Adele A Berardinelli Angela A La Rosa Matteo M Bruno Claudio C Distefano Maria Grazia MG Baranello Giovanni G Barcellona Costanza C Scutifero Marianna M Marcato Sonia S Palmieri Arianna A Politano Luisa L Morandi Lucia L Mongini Tiziana T Pegoraro Elena E D'Angelo Maria Grazia MG Pane Marika M Rodolico Carmelo C Minetti Carlo C Bertini Enrico E Vita Giuseppe G Mercuri Eugenio E

Neuromuscular disorders : NMD 20160202 3

In Duchenne muscular dystrophy (DMD) little has been reported on the association between clinical outcome measures and patient health-related quality of life (HRQOL) tools. Our study evaluated the relationship between 12 month changes on the Generic Core Scales (GCS), the Multidimensional Fatigue Scale and the Neuromuscular Module of the PedsQL(TM) with several outcome measures (6 minute walk test, North Star Ambulatory Assessment and timed items) in ambulatory DMD. Ninety-eight ambulatory DMD i ...[more]

PMID: 26916554

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Project description:BackgroundHip fracture is an important and frequent health problem worldwide. To date, there are still limited studies focused on the analysis of health-related quality of life (HRQOL) after a hip fracture in the Spanish population, especially with long-term follow-up.ObjectiveTo determine the HRQOL at 12 months after hip fracture and to identify potential factors associated with HRQOL.DesignProspective observational study.SettingTraumatology units of two university hospitals in province Cáceres (Spain).ParticipantsA total of 224 patients were admitted to the unit and required immediate surgery due to a hip fracture.MethodsHRQOL was measured with the EuroQol-5D questionnaire (EQ-5D) and the SF-12 Health Survey.ResultsScores from the visual analog scale EQ-5D decreased significantly (p < 0.001) from 72.8 at baseline to 48.3 after 1 month, to 48.2 after 6 months and to 46.1 after 12 months. The EQ-5D index score showed a similar significant reduction (p < 0.001) from 0.6 to 0.1, 0.3 and 0.3, respectively. Values of the physical component summary (PCS-12) significantly decreased (p < 0.001) from 38.6 at baseline to 31.0, 33.1 and 33.5. The mental component summary (MCS-12) decreased from 46.5 to 44.8 after 6 months (p = 0.022) and 44.3 after 12 months (p = 0.005). Factors potentially associated with HRQOL at 12 months after hip fracture were depression status after 12 months (B = 0-1.876; 95% CI [-2.409 to -1.343]; p < 0.001), functional ambulation classification after 12 months (B = -12.133; 95% CI [-17.970 to -6.297]; p < 0.001), EQ-5D VAS at baseline (B = 0.223; 95% CI [0.115-0.330]; p < 0.001), and age (B = -0.323; 95% CI [-0.594 to -0.053; p = 0.015).ConclusionsPatients experience a significant impairment in HRQOL H after a hip fracture, especially in self-care, pain/discomfort, usual activities, mobility and anxiety/depression. The decline in the HRQOL is effective the first month and lasts at least 12 months after the surgical intervention.

Project description:Extracorporeal life support (ECLS) provides emergency pulmonary and cardiac assistance for patients in respiratory or cardiac failure. Most studies evaluate the success of ECLS based on patients' survival rate. However, the trajectory of health status and quality of life (QOL) should also be important considerations. The study's aim was to explore changes in health status and QOL in adult patients weaned from ECLS who survived to hospital discharge over a one-year period.A prospective longitudinal study was conducted from April 2012 to September 2014. A convenience sample of patients who had undergone ECLS was followed for one-year after hospital discharge. Heath status was measured with a physical activity scale, the Centre for Epidemiologic Studies Depression scale, and a social support scale; we assessed quality of life with the physical and mental component summary scales of the Short-Form 36 Health Survey. Changes in depression, social support, physical activity and QOL were analysed with generalized estimating equations at 3-month intervals; participants' QOL at 12 months after discharge was compared with the general population.A total of 231 patients received ECLS during the study period. Sixty-five patients survived to hospital discharge (28% survival rate); 32 participants completed the study. Data showed scores for physical activity increased significantly over time (p < .001), while depression and social support significantly decreased (p < .05 and p < .001, respectively). Participants with veno-venous ECLS had higher scores for depression than participants with veno-arterial ECLS (p < .05). PCS scores significantly increased at 9, and 12 months after discharge (p < .05 and p < .001, respectively). There was no significant change in MCS scores.This was a preliminary study of patients with ECLS following hospital discharge over a one-year period. One year following hospital discharge survivors of ECLS continued to experience physical complications and some continued to have depressive symptoms; the level of social support was significantly lower after hospital discharge. Healthcare professionals should understand the trajectory of health status and QOL after discharge, which can help developing evidence-based interventions and improve QOL for survivors of ECLS.

Project description:Background:Reductions in energy intake are seen in weight loss trials, but whether this occurs with improvements to diet quality (DQ) is less established. The aim of this study was to evaluate changes in diet quality in a sample of volunteers in a weight loss trial. Methods:This was a secondary analysis of dietary data from a lifestyle intervention trial (the HealthTrack study) which advised on dietary guidelines. The trial ran for 12 months with three treatment groups: control (general advice C), intervention (individualised advice, I), and intervention plus a supplement of walnuts (IW). Both the published a priori diet quality score (APDQS, maximum score 164) and a study specific Diet Quality Tracker (DQT, maximum score 44) indicated compliance to dietary advice. DQ scores calculated at 0, 3months and 12months were evaluated using two-way RMANOVA, one-way ANOVA and one-way RMANOVA. Changes in intakes of food groups and nutrients were analysed using Kruskal-Wallis and Friedman's tests. Results:There were no differences between groups at baseline, but at 3months IW recorded higher DQ scores (APDQS:96?±?10; DQT:22?±?5, P?<?1?×?10-3 for both) compared to I (APDQS:91?±?13, P?<?1?×?10-3; DQT:21?±?4, P?<?1?×?10-2) and C (APDQS:87?±?12, P?<?5?×?10-2; DQT:19?±?4, P?>?5?×?10-2), and a higher consumption of nuts at 3 months (P?<?1?×?10-3), and 12months (P?<?1?×?10-2). All groups reported decreased intakes of discretionary foods/beverages assessed by the DQT (P?<?1?×?10-3 for IW and I; P?<?1?×?10-2 for C). The APDQS showed this as reduced intakes of grain based desserts (P?<?1?×?10-3 at 3 and 12months), and salty snacks at 12months (P?<?1?×?10-3 for IW and I; P?<?5?×?10-2 for C). Intakes of monounsaturated and saturated fatty acids were lowest, and polyunsaturated fatty acids highest for IW (P?<?1?×?10-3), resulting in a higher dietary polyunsaturated:saturated fat ratio (P?<?1?×?10-3). Conclusions:Lifestyle intervention addressing dietary guidelines can lead to significant reductions in consumption of discretionary foods and saturated fat, but individualised advice may have a greater impact on improving overall DQ regardless of DQI used. Providing a healthy food supplement may help assure higher DQ and where the food is walnuts, produce commensurate differences in dietary fatty acid profiles. Trial registration:ANZCTRN 12614000581662. Date of registration: 30th May 2014.

Dataset Information

Health-related quality of life and functional changes in DMD: A 12-month longitudinal cohort study.

Publications

Health-related quality of life and functional changes in DMD: A 12-month longitudinal cohort study.

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