A Qualitative Approach to Understanding Quality of Life in Pediatric Palliative Care

Evan, Elana E.; Calonico, Elise; Tan, Jolene H.; Zeltzer, Lonnie K.

doi:10.4172/2165-7386.s1-005

Cited by 4 publications

(5 citation statements)

References 11 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Psychological problems, low self-worth, even depression issues often arise (Vlachioti et al, 2016). It is extremely important for health providers to be able to comprehend the ideal QoL patients should have (Evan et al, 2012). The results of this study supported the idea of the necessity of palliative intervention on pediatric cancer patients from the early stages of the disease progression and throughout the disease trajectory.…”

Section: Discussionsupporting

confidence: 66%

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Andriastuti

Halim

Tunjungsari

et al. 2022

Asian Pac J Cancer Prev

View full text Add to dashboard Cite

Objective: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it has not been used widely. This study is aimed at determining the benefits of integrated HBPC for the quality of life (QoL) and symptoms intensity in Indonesian children with malignancies. Method: A randomized controlled trial was carried out to compare the quality of life between patients who were given PC (a three-month home visit) and those who did not receive PC (control group). Each group was constituted of thirty children with cancer and aged 2-18 years old and were consulted by a palliative team. The participants were randomly allocated to two groups. In the first and twelfth weeks of the intervention, all patients were assessed using the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0 (report by proxy or self-report). Symptoms intensity (pain, anorexia, sleep disturbance) were scored by using Edmonton Symptoms Assessment Scale (ESAS). The mean score and each dimension score of both groups were compared and analyzed using bivariate analysis. Results: In total, fifty participants were included in the study. A significant difference was found between the two groups in terms of the mean total score in control group 62.39 and intervention group 81.63 (p<0.001). The QoL was improved in the intervention group, while it was declined in the control group as the disease progressed. The main improvements were in the pain and nausea aspects (p<0.001), followed by procedural anxiety (p=0.002), treatment anxiety (p=0.002), and worry (p=0.014). Palliative intervention significantly reduced sleep disturbances (p=0.003) and anorexia (p<0.001). Conclusion: Home-based PC improved several aspects of QoL and caused better symptom management in children with malignancies. An early intervention concurrent with the underlying treatment can improve QoL in these children.

show abstract

Section: Discussionsupporting

confidence: 66%

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Andriastuti

Halim

Tunjungsari

et al. 2022

Asian Pac J Cancer Prev

View full text Add to dashboard Cite

show abstract

Section: Discussionmentioning

confidence: 99%

“…The prominence of the psycho-social and spiritual concerns described by even very young children was surprising but highlights the need to address these concerns to improve child well-being, self-efficacy, resilience, coping and retention in care. 18,[42][43][44] The experience of symptoms also differed by age for children and their caregivers. For many children, pain was associated with fear, but for young children pain was associated with fear of impending death, while for adolescents it mediated desires for death to escape distress and suffering.…”

Section: Discussionmentioning

confidence: 99%

“…[15][16][17] Specific challenges of outcome measurement in this population include difficulties in developing tools for children with life-limiting and life-threatening conditions, including variable cognitive development, impacts of advanced disease and communication impairment. 18 Recent evidence on outcomes specific to this population found it largely drawn from studies of oncology patients in high-income countries using proxy (family and professional) views and expert opinion. 8,19 More so, the evidence does not consider social and developmental 20 outcomes for children with life-limiting and lifethreatening conditions (LLCs).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

et al. 2020

View full text Add to dashboard Cite

Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa. Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report. Results: A total of 120 interviews were conducted with children with life-limiting conditions ( n = 61; age range: 7–17 years), and where self-report was not possible, caregivers ( n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age. Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.

show abstract

“…It is extremely important for health providers to be able to comprehend the ideal QoL patient should have. 22 Significantly improved functional areas include pain, nausea, procedure anxiety, treatment anxiety, and worry. The most common side effects in the treatment of pediatric cancer are pain and nausea.…”

Section: Discussionmentioning

confidence: 99%

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Andriastuti

Halim

Tunjungsari

et al. 2019

Preprint

View full text Add to dashboard Cite

Background: In these last few years, an integrated approach between palliative care (PC) and chronic and/or life-threatening conditions care have been widely used. Home-based PC service is developed to meet the needs of the patients at home, but hasn’t been applied widely. This study is aimed to determine the benefit of integrated home-based PC in the quality of life (QOL) and symtomps intensity of Indonesian children with malignancies. Method: A randomized controlled trial to compare the quality of life between patients who were given PC (a 3-month home visit) and those who were not (intervention vs control group) was conducted, each group containing 30 children with cancer aged 2-18 years old who were consulted to palliative team. Participants were randomly assigned into each group. In the first and twelfth week of the intervention, all patients were assessed with the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0 (report by proxy or self-report). Symptoms intensity (pain, anorexia, sleep disturbance) were scored by using Edmonton Symptoms Assessment Scale (ESAS). Mean score and each dimension score of both group were compared and analyzed using bivariate analysis. Results: A total 50 participants were included in analysis. Significant difference was found between two groups with average total score in control group 62.39 and intervention group 81.63 (p<0.001). In the intervention group QoL tends to improve, whereas in the control group, those did not get palliative intervention, quality of life tends to decrease as the disease progress. The most improved aspect in QoL is pain and nausea (p<0.001), followed by procedural anxiety (p=0.002), treatment anxiety (p=0.002), and worry (p=0.014). Palliative intervention was found to be able to reduce sleep disturbances (p=0.003) and anorexia (p<0.001) significantly. Conclusion: Home-based PC improved several aspects of the QOL and provide better symptoms management of children with malignancies. An early intervention concurrent with the underlying treatment is believed to be able to improve their quality of life. Trial Registration: This study has been retrospectively registered in ClinicalTrials.gov ID: NCT04067687 (August, 22nd 2019).

show abstract

A Qualitative Approach to Understanding Quality of Life in Pediatric Palliative Care

Cited by 4 publications

References 11 publications

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial

Contact Info

Product

Resources

About