Health-related quality of life in adults treated for paediatric acute lymphoblastic leukaemia: a cross-sectional and longitudinal cohort study

IntroductionAcute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship.Methods and analysisThis cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience.Ethics and disseminationThe study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.

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Long-term follow-up of mental health, health-related quality of life and associations with motor skills in young adults born preterm with very low birth weight

Health and Quality of Life Outcomes ◽

10.1186/s12955-016-0458-y ◽

2016 ◽

Vol 14 (1) ◽

Cited By ~ 22

Author(s):

Ingrid Marie Husby ◽

Kaia Mølbach-Thellefsen Stray ◽

Alexander Olsen ◽

Stian Lydersen ◽

Marit Sæbø Indredavik ◽

...

Keyword(s):

Quality Of Life ◽

Motor Skills ◽

Very Low Birth Weight ◽

Health Related Quality ◽

Related Quality ◽

Long Term Follow Up ◽

Health Related

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Improved Motor Proficiency and Quality of Life in Youth With Prader–Willi Syndrome and Obesity 6 Months After Completing a Parent-Led, Game-Based Intervention

Pediatric Exercise Science ◽

10.1123/pes.2020-0160 ◽

2021 ◽

pp. 1-9

Author(s):

Daniela A. Rubin ◽

Kathleen S. Wilson ◽

Jared M. Tucker ◽

Diobel M. Castner ◽

Marilyn C. Dumont-Driscoll ◽

...

Keyword(s):

Quality Of Life ◽

Prader Willi Syndrome ◽

Health Related Quality ◽

Fat Percentage ◽

Motor Proficiency ◽

Related Quality ◽

Health Related

Purpose: To determine changes and potential differences in physical activity (PA), gross motor proficiency (MP), and health parameters after a 6-month follow-up (FU) period following participation in a parent-led PA intervention in youth with or without Prader–Willi syndrome (PWS). Methods: About 42 youth with PWS and 65 youth without PWS but with obesity (body fat percentage >95th percentile for age and sex), aged 8–16 years, participated. The intervention included preplanned PA sessions containing playground and console-based video games scheduled 4 days per week for 24 weeks. Families received training and curriculum materials. PA (accelerometry), MP (Bruininks–Oseretsky Test of MP), and health-related quality of life were obtained before (PRE), after completing the intervention (POST), and at FU. Results: There were no significant changes in PA at any time point. At FU and POST, participants showed higher bilateral coordination (PRE = 9.3 [0.4], POST = 11.7 [0.5], and FU = 11.1 [0.6]); speed and agility (PRE = 9.2 [0.4], POST = 10.8 [0.4], and FU = 11.5 [0.5]); and strength (PRE = 8.0 [0.3], POST = 9.2 [0.3], and FU = 9.2 [0.3]) than at PRE. At FU (80.3 [2.1]) and POST (79.8 [1.7]), youth without PWS showed higher health-related quality of life than PRE (75.0 [1.8]). Conclusion: The improvements in MP and health-related quality of life at FU suggest long-term durability of intervention outcomes.

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Health-Related Quality of Life, Functional Decline, and Long-Term Mortality in Older Patients Following Hospitalisation Due to COVID-19

10.21203/rs.3.rs-150067/v1 ◽

2021 ◽

Author(s):

Marte Walle-Hansen ◽

Anette Ranhoff ◽

Marte Mellingsæter ◽

Marte Wang-Hansen ◽

Marius Myrstad

Keyword(s):

Quality Of Life ◽

Older Patients ◽

Functional Decline ◽

Health Related Quality ◽

Negative Change ◽

Related Quality ◽

Health Related

Abstract Background Older people are particularly vulnerable to severe COVID-19. Little is known about long-term consequences of COVID-19 on health-related quality of life and functional status in older people, and the impact of age in this context. We aimed to study age-related change in health-related quality of life (HR-QoL), functional decline and mortality among older patients six months following hospitalisation due to COVID-19. Methods This was a cohort study including patients aged 60 years and older admitted to four general hospitals in South-Eastern Norway due to COVID-19, from March 1 up until July 1, 2020. Patients who were still alive were invited to attend a six-month follow-up. Change in HR-QoL and functional status compared to before the COVID-19 hospitalisation were assessed using the EuroQol 5-dimensional-5 levels questionnaire (EQ 5D-5L). A change in visual analogue scale (VAS) score of 7 or more was considered clinically relevant. Results Out of 216 patients aged 60 years and older that were admitted to hospital due to COVID-19 during the study period, 171 were still alive 180 days after hospital admission, and 106 patients (62%) attended the six-month follow-up. Mean age was 74.3 years, 27 patients (26%) had experienced severe COVID-19. 57 participants (54%) reported a decrease in the EQ5D-5L VAS score after six months, with no significant difference between persons aged 75 years and older compared to younger. 70 participants (66%) reported a negative change in any of the dimensions of the EQ-5D-5L, with impaired ability to perform activities of daily life (35%), reduced mobility (33%) and having more pain or discomfort (33%) being the most commonly reported changes. 46 participants (43%) reported a negative change in cognitive function compared to before the COVID-19 hospitalisation. Six-month mortality was 21%, and increased with increasing age. Conclusions More than half of the patients reported a negative change in HR-QoL six months following hospitalisation due to COVID-19, and one out of three experienced a persistently impaired mobility and ability to carry out activities of daily living. The results suggest awareness of long-term functional decline in older COVID-19 patients.

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