scholarly journals Impact of COVID 19 on the quality of life OF LIFE (QoL) of patients living with Sickle Cell Disorder (SCD) in Lagos Nigeria

2021 ◽  
Author(s):  
Annette Akinsete ◽  
Michael Ottun ◽  
Adelabu Hameed ◽  
Jorden Veeneman ◽  
Larry Ajuwon
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Age Distribution ◽  
Face To Face ◽  
Care Givers ◽  
Disease Module ◽  
Pain Crisis ◽  
The Impact ◽  
Cell Disorder

The study aimed to assess the impact of the COVID-19 pandemic on Quality of Life (QoL) in persons living with Sickle Cell Disorder (SCD) in Lagos, Nigeria and to determine how they coped during the pandemic, particularly during the period of total lockdown with the additional SHIELDING measures to which they had to adhere. Data was collected using a standardized protocol PedsQL, Sickle Cell Disease Module version 3, designed for youth within the ages of 13 to 18 years and 19 to 35 years and their parents and guardian if underage. The survey captured data on patients pain impact, hurts, management, treatments, communication with their caregivers and their guardians perception. The survey was performed online, or face to face and telephone interview if online was not possible. Contacts of patients and parents were obtained from the database of Sickle Cell Foundation Nigeria. A total of 105 (80 patients and 25 parents) participants responded to the survey. The age distribution of respondents was highest at 56 percent in the age bracket of 13 to 18 years old. Pain crisis were very common amongst patients. The survey revealed that the type of treatment or care received at these times determined whether or not the patients visited the hospital when they had pain crises. In addition, as patients reports an increase in ill treatment they experienced in the hands of health care givers, so did the fear of accessing treatment during the COVID pandemic. It was observed that the frequency of pain crises experienced by SCD patients was proportional to the patients quality of life (the higher the frequency of pains, the worse the QoL). As a follow-up, a more detailed study would be required, as this study was limited in the capturing of the demographics, sex and number of participants; Considering the number of persons living with SCD that visit the Sickle Cell Foundation Nigeria, (approx. 3,000 patients), the number of responses in this study was low (105). It is believed that a higher number of responses would have given more information about the Sickle Cell burden and the QoL of persons living with SCD in Lagos during the COVID-19 pandemic. Lagos was the epicentre of the COVID-19 pandemic in Nigeria.

scholarly journals Assessment of quality of life in transfusion dependent thalassemic children - need to address parents/care givers

2020 ◽  
Vol 8 (1) ◽  
pp. 147
Author(s):  
Veeraraja B. Sathenahalli ◽  
G. R. Rajashekar Murthy ◽  
Netra Gouda ◽  
Sanjay K. Shivanna
Keyword(s):  
Quality Of Life ◽  
Psychosocial Functioning ◽  
Clinical Manifestations ◽  
Well Being ◽  
School Functioning ◽  
Psychosocial Burden ◽  
Globin Chains ◽  
Care Givers ◽  
The Impact

Background: Thalassemia is an autosomal recessive congenital disease caused by the reduced or absent beta globin chain synthesis of hemoglobin tetramer. The degree of imbalance between alpha and non alpha globin chains determines the severity of clinical manifestations. The disabling nature of the disease and chronic therapy affects the normal life causing psychosocial burden. Overall patient’s life, such as education, free-time, physical activities, skills, capabilities, and family adjustment is affected. The effects of which often result in psychological, emotional and social compromise. Health-Related Quality of Life (HRQoL) measurement is a multidimensional concept that focuses on the impact of the disease and its treatment on the well being of an individual.Methods: A descriptive observational hospital based study was conducted over a period of 3 months. Transfusion dependency in thalassemic children aged between 5 years and 18 years was the inclusion criteria. Thalassemic children having debilitating illnesses unrelated to thalassemia were excluded. Quality of life was assessed using Pediatric Quality of Life Inventory (PedsQL™ 4.0)4. The tool assesses the quality of life in five domains: physical functioning (PF: 8 items), psychosocial functioning (sum of emotional, social and school functioning), emotional functioning (EF: 5 items), social functioning (SF: 5 items) and school functioning (SC: 5 items).Results: Total of 125 children were enrolled with a mean age of 9.4±4.6 years (age range 5-18 yrs). According to the PedsQL questionnaire, the quality of life was similarly assessed by both parents and children. The total mean QoL score of the parents was 72.36±11.47 and of the children was 77.63±14.17. Emotional, school and psycho-social function were significantly affected according to both child and parents without statistical significance.Conclusions: Thalassaemia patients and their parents require lifelong psychological support for prevention of mental health issues. By increasing the awareness and knowledge levels of the parents, we can help sick children in developing countries to get the best care locally and to thus improve HRQoL.

A criança com doença falciforme e a família: revisão integrativa

2016 ◽  
Vol 15 (2) ◽  
Author(s):  
Elaine Cristina Rodrigues Gesteira ◽  
Regina Szylit Bousso ◽  
Maira Deguer Misko ◽  
Carolliny Rossi de Faria Ichikawa ◽  
Patrícia Peres de Oliveira
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Family Relations ◽  
Scientific Evidence ◽  
Cell Disease ◽  
Psychosocial Effects ◽  
The Family ◽  
The Impact

Aim:  To  identify  scientific  evidence  about  families  of  children  with sickle  cell  disease.  Method:  An  integrative  review  of  the  search  used the  following descriptors:  anemia  sickle  cell;  hemoglobin  SC  disease;  hemoglobin sickle;  family; family  relations;  and,  child.  The  search  was  carried  out  for  literature  in  Portuguese, English,  and  Spanish.  The  search  used  databases  such  as  MEDLINE,  LILACS,  CINAHL, and PubMed, and looked for articles published between January 2005 and January 2015. Results:   There   were   16   articles   selected  that   originated  the   following  thematic categories: the impact of sickle cell disease on the family, psychosocial effects on family dynamics,  child's  quality  of  life,  and  family  and  social  support/support  networks. Discussion:  The  studies  report  that  the  family  remains  the  main  provider  of  care  for children  with  sickle  cell  disease,  and  that  families  faces  challenges  in  achieving comprehensive care and fighting for their children’s quality of life. C onclusion: This evidence  will  provide  support  for  multi-professional  teams  in the  construction  of continuous care for the families of children who are sickle cell patients.

scholarly journals The impact of the oral condition of children with sickle cell disease on family quality of life

2016 ◽  
Vol 30 (1) ◽  
Author(s):  
Maria Luiza da Matta Felisberto FERNANDES ◽  
Ichiro KAWACHI ◽  
Patrícia CORRÊA-FARIA ◽  
Saul Martins PAIVA ◽  
Isabela Almeida PORDEUS
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Family Quality Of Life ◽  
Cell Disease ◽  
The Impact ◽  
Oral Condition

scholarly journals Content validation of a self-report daily diary in patients with sickle cell disease

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Michelle K. White ◽  
Cory Saucier ◽  
Miranda Bailey ◽  
Denise D’Alessio ◽  
April Foster ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Self Report ◽  
Content Validation ◽  
Cell Disease ◽  
Concept Elicitation ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and have been associated with increased morbidity and mortality. The Sickle Cell Pain Diary- Self Report (SCPD-S) was developed as a daily patient-reported outcome (PRO) measure primarily intended to capture the frequency and severity of SCD-related pain during and outside of a SCPC. The SCPD-S also examines the impact of the pain associated with an SCPC on other health-related quality of life concepts. The objective of this study was to investigate the content validity of the SCPD-S. Methods The content validation testing included 18 in-depth hybrid concept elicitation and cognitive debriefing interviews conducted with SCD patients in the US aged 12 years and older. Interviewers used a semi-structured interview guide and a think-aloud approach for the cognitive debriefing portion. All interviews were recorded, transcribed, coded and analyzed. Results Eighteen interviews across two rounds were conducted. Round 1 hybrid interviews (n = 12) resulted in the expansion of the SCPD-S from 13 to 19 items. Items on the impact of an SCPC on social and recreational activities, sleep, and emotional well-being were added. Five items were significantly revised, as were three response choice sets. Round 2 hybrid interviews (n = 6) confirmed the comprehensiveness of the revised diary, understandability of the wording, and appropriateness of the recall period and response sets. Saturation analyses specific to concept elicitation revealed that no additional interviews were needed. Conclusions This study provided evidence to support the content validity of the SCPD-S, a self-report daily diary. Data gathered during patient interviews indicated that the SCPD-S is a fit for purpose measure of SCD and SCPC-related pain frequency and severity and the impact of this pain on other health-related quality of life concepts including fatigue and emotional health. The numerous changes to the SCPD-S as a result of the study findings highlight the importance of the content validation process when developing a PRO measure.

scholarly journals Quality of Life in Women with Urinary Incontinence Seeking Care Using E-Health

2021 ◽  
Author(s):  
Ylva Åström ◽  
Ina Asklund ◽  
Anna Lindam ◽  
Malin Sjöström
Keyword(s):  
Quality Of Life ◽  
Urinary Incontinence ◽  
Short Form ◽  
Self Management ◽  
Face To Face ◽  
International Consultation ◽  
Urinary Tract Symptoms ◽  
Specific Factors ◽  
The Impact

Abstract Background Quality of life (QoL) in women with urinary incontinence (UI) is mainly affected by severity of UI, but also by, for example, UI subtype, comorbidity, age, and socioeconomic status. Using e-health to provide treatment for UI is a new method. In this study we investigate what factors have the highest impact on QoL in women who turned to e-health for self-management of UI. Methods Baseline data from three randomized controlled trials (RCT) for evaluating e-health treatments for UI were used, including 373 women with stress urinary incontinence (SUI), and 123 women with urgency/mixed UI (UUI/MUI). All participants were recruited online, with no face-to-face contact. We used the questionnaires International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF) to measure UI severity, and ICIQ Lower Urinary Tract Symptoms Quality of Life (ICIQ-LUTSqol) to measure condition-specific QoL. To evaluate factors impacting on QoL, a linear regression model was used. Results The mean ICIQ-LUTSqol score was 34.9 (SD 7.6). The ICIQ-UI SF score (0-21) affected the ICIQ-LUTSqol (19-76), with an adjusted mean increase of 1.5 for each 1.0 increase in the overall ICIQ-UI SF score (p <0.001). UUI/MUI gave an adjusted mean increase of 2.5 in ICIQ-LUTSqol score compared with SUI (p <0.001). Conclusion As in women seeking other methods of care for UI, a decreased QoL was found in those who turned to e-health for self-management of UI. The impact of condition-specific factors on their QoL was slightly lower than that of women with UI who sought help in ordinary care, suggesting that e-health might reach a new group of women in need of treatment. Severity of the leakage had greater impact on QoL than type of UI.

Emotional Burden, Quality of Life, and Coping Styles in Care Givers of Patients with Disorders of Consciousness Living in Italy: Preliminary Data

2016 ◽  
Vol 17 (3) ◽  
pp. 254-264 ◽  
Author(s):  
Caterina Romaniello ◽  
Chiara Simoni ◽  
Marina Farinelli ◽  
Erik Bertoletti ◽  
Vincenzo Pedone ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Normative Data ◽  
Coping Styles ◽  
Disorders Of Consciousness ◽  
Emotional Burden ◽  
Care Givers ◽  
And Coping ◽  
The Impact ◽  
Over Time

The literature about the care givers of patients with Disorders of Consciousness (DOCs) has highlighted the impact on both mental and physical dimensions of quality of life. This study aimed to: (1) describe emotional burden, quality of life, and coping styles in care givers of hospitalized patients with DOCs, compared to Italian normative data; (2) explore the relationships between these variables and their associations with socio-demographic features; and (3) describe their changes over time.Fifteen care givers of patients with DOCs, mostly middle-aged women, were assessed using the Family Strain Questionnaire, the SF-36 Health Survey, and the Coping Orientation to Problems Experienced – Nuova Versione Italiana. Eleven subjects were also assessed after 6 and 12 months. Data were analysed through descriptive statistics, correlations, and nonparametric tests of group differences.Compared to the Italian normative data, our sample showed a worse outcome in mental health, social functioning, global mental component, and emotional role functioning. Furthermore, subjects with high emotional burden had more thoughts of death compared to subjects with low emotional burden. Follow-up analyses revealed no variables changed over time.These results highlight the need for psychological interventions and support, since care givers represent an important part of an all-embracing support and care network for patients with DOCs.

Impact of Sickle Cell Disease on Parents.

Blood ◽  
2006 ◽  
Vol 108 (11) ◽  
pp. 3348-3348
Author(s):  
Alison M. Blyth ◽  
Lisa M. Foerster ◽  
Julie A. Panepinto
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Family Functioning ◽  
Sickle Cell ◽  
Family Relationships ◽  
Summary Score ◽  
Family Impact ◽  
Cell Disease ◽  
The Impact

Abstract Background: Caregivers of patients with chronic illness experience a heavy burden leading to their own negative health outcomes and decreased quality of life. Parents may experience a similar burden caring for children with sickle cell disease, a chronic illness characterized by intermittent hospitalizations, recurrent painful crises, and reduced life expectancy. There are little data evaluating how caring for a child with sickle cell disease affects family functioning and parental health-related quality of life (HRQL). Purpose: To examine family functioning and HRQL of parents of children with sickle cell disease. Methods: During a routine clinic visit, parents completed the PedsQL Family Impact Module, which measures the HRQL of parents who are caring for a child with chronic disease by assessing parental fatigue, stress and difficulty concentrating, etc. In addition, the PedsQL Family Impact Module measures family functioning by assessing family relationships and daily activities. Scores range from 0, representing poor family functioning or HRQL, to 100, representing better family functioning or HRQL. To highlight the impact of caring for a chronically ill child living at home, we compared mean family functioning and HRQL scores of parents of children with sickle cell disease to parents of children with a complex chronic health condition who lived in a long-term Children’s Convalescent Hospital (Varni et al.) using a one-sample t-test. Results: Forty-three parents (41 female and 2 male) of children with sickle cell disease completed the PedsQL Family Impact Module. The mean age (standard deviation) of the children was 9.9 yrs (4.9). Parents of children with sickle cell disease had a significantly lower HRQL summary score than the comparison population (71.99 versus 83.75; p≤.001). In addition, parents of children with sickle cell disease had a significantly lower family functioning summary score than the comparison population (73.91 versus 84.27; p=.002) Table 1 shows the mean HRQL and family functioning scores for each scale in both groups of parents. Conclusions: Caring for a child with sickle cell disease has a significant impact on the parent’s HRQL and family functioning. Parents of children with sickle cell disease are more fatigued, have more trouble concentrating and remembering things, and struggle with stress within their families. Future research in sickle cell disease needs to examine the impact of the child’s treatment and care on family functioning and parental HRQL to improve the burden on these parents. Additionally, greater parent education, family-centered support, and social support may be needed to lessen this burden. Health Related Quality of Life and Family Functioning of Parents of Children With Sickle Cell Disease Scale Sickle Cell Disease (n=43) Comparison Group (n=12)(Varni et al.) *p<.005 HRQL Physical Functioning 59.07* 82.99 Emotional Functioning 74.63 78.33 Social Functioning 79.07 85.42 Cognitive Functioning 76.17* 88.75 Family Functioning Family Daily Activities 67.46* 85.14 Family Relationships 78.02 83.75

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