Association of Health – Related Quality of Life to Family Dynamics and Social Support among Pediatric Patients with Leukemia in Tertiary Hospitals in Northern Philippines
Jonas P. Cruz
Background of the Study: Leukemia is the most prevalent cancer affecting children around the world but majority of the cases are idiopathic in nature. Generally, patients with Leukemia experience poorer health related quality of life compared to the general population. Though a wide interest in studying the health related quality of life of these types of patients where on the lime light in the recent years, none of these works focused on examining the relationship of the HRQoL to the family dynamics and social support of the patients. This study aims to examine the association of Health – Related Quality of Life (HRQoL) to the family dynamics and social support among pediatric patients diagnosed with Leukemia.
Design: This research is a cross – sectional, correlation study.
Method: A questionnaire with four parts will be used to gather data on demographic data of the patients and their family, their family dynamics, social support and health related quality of life. Data will be collected from pediatric patients aged 5 to 18 years with Leukemia, their parents and siblings. Data will be treated using the IBM SPSS Statistics. Both descriptive and inferential statistics will be used.
Background of the Study
Leukemia is the most prevalent cancer affecting children around the world but majority of the cases are idiopathic in nature.1 In the United States, Leukemia is one of the most diagnosed cancer and one of the leading causes of deaths among children in 2011 with the highest incidence rate (8.8 per 100,000) in children aged 1 to 4 years and highest death rate (0.8 per 100,000) among children aged 15 to 19 years.2 Similarly, children with Leukemia is considerably the fastest – growing types of patients in hospitals in the Philippines. It account for about 40 to 60 percent of cancers in children and topped the list of killer diseases more than the combined number of deaths caused by dengue hemorrhagic, blood infection and prematurity.3 In the recent report from the Department of Health of the Philippines, Leukemia is among the ten leading causes of child mortality with 2.7, 2.4 and 1.8 per 100,000 population for children aged 1 to 4 years old, 5 to 9 years old and 10 to 14 years old, respectively. This is an alarming shift since in the past years; Leukemia was not part of the list.4 In a recent study, childhood leukemia relative survival in the Philippines was found to be lower (32.9 %) compared to Asian Americans (80.1 %) and Caucasians (81.9 %). Furthermore, attainment of equal survival rates of children in the Philippines lagged behind by 20 to >30 years compared with children with Leukemia in the United States.5 This existing difference can be attributed with deficiency in pediatric cancer care, inaccessibility or unavailability of the needed diagnostic and treatment modalities, financial constraints and unawareness.5-9
In a worldwide perspective, therapy has noticeably enhanced over the past decades and the overall rate of survival among children with Leukemia has also increased.10-12 While the prognosis of leukemia in children has improved dramatically, so as the rise of clinical interest in understanding the health related quality of life among childhood Leukemia patients.13 Various studies were conducted to determine the health related quality of life of these patients and their differences between those patients undergoing maintenance chemotherapy with those not on treatment, identify the factors that affects their HRQoL,14-16 HRQoL of childhood leukemia survivors,17-19 difference between patient, parent proxy reported and clinician reported HRQoL,20,21 and HRQoL of parents taking care of these patients22. A study has reported that the social, physical and emotional health and well-being of childhood Leukemia patients are significantly lower compared to their community peers.21 Furthermore, these patients experienced declining deficits in HRQoL during active treatment phases which is the same as losing approximately 2 months perfect health life.23 Treatment like maintenance chemotherapy had shown effect on the quality of life of children with Leukemia. Patients receiving this kind of therapy reported lower HRQoL in all domains than those who are not on treatment. Psychosocial health was reported to be most affected. Likewise, parents taking care of children undergoing maintenance chemotherapy reported significantly lower quality of life as compared to parents of patients who are not undergoing the same therapy.14 Similarly, survivors of Leukemia have shown poor HRQoL17 however, relapsed survivors reported lower general health compared to non-relapsed survivors24.
Factors affecting the quality of life were also identified and reported by some research studies. These factors that can affect the HRQoL of pediatric patients with Leukemia includes the type of cancer treatment they are undergoing such as chemotherapy and the use of Dexamethasone which was reported to cause lower HRQoL.14,25-27 Impaired overall sleep were also reported to be associated with lower HRQoL among these patients. More problems were found as associated with sleep anxiety, delay on sleep onset, feeling of sleepiness during day time and night wakenings.27-29 Children’s pain and fatigue over three days following a chemotherapy also influence the quality of life not only of the patients but also their family.30 Cancer itself is an important factor affecting the HRQoL and the stage of disease showed a considerable importance on HRQoL scores.31 Moreover, clinically significance associations to HRQoL were observed with anxiety, depression and obesity.32 Another study also reported duration of hospital admission, increased frequency of hospital visits, female patients, younger age of diagnosing the disease, and the size of the family were all associated to a lower over HRQoL scores of these patients.33
Though a wide interest in studying the health related quality of life of these types of patients where on the lime light in the recent years, none of these works focused on examining the relationship of the HRQoL to the family dynamics and social support of the patients. Some of the past research studies have focused on the impact of taking care of a child with Leukemia to the quality of life of the caregiver and their family as well as the burden of care for these patients.34-38 However, family dynamics and social support and its association to HRQoL was never attempted.
Family dynamics are the interaction between members of the family as well as the different relationships that is present within a family. Every family has its own unique dynamic, which is apparent in its own unique way.39 The whole family dynamics can be understand by measuring the family functioning, family environment and family quality of life.40 Family dynamics maybe affected by the existence of the disease of the children and may be altered. How family members see the family when attending to commitment such as taking care of the patient refers to family functioning. This permits identifying individual perceptions of family values as a psychosocial or social support resource. The way each family member perceives the efficacy and quality of this resource can significantly influence the health status of its member.41 Although positive relationship among family members and social support can decrease risks of mortality and enhance total health, studies have reported that some familial relations negatively affect health. Negative effect on health can be caused by problematic and non-supportive familial relationships. Poor-quality relationships can harm physical and mental health.42 Further, couples with unequal division of decision making and power are related with higher levels of depression.43 Living and being reared in an unsupported, neglectful or violent environment is also related with poor physical health and development.42 On the other hand, good family relationships are significant predictor for a better HRQoL as shown in a study on pediatric burn survivors.44 Likewise, fewer arguments within the family were associated to higher quality of life among diabetes patients.45,46
Studies have also reported relationship between social support and HRQoL. Higher levels of social support were shown to be associated to lower risk for physical dysfunctions, mental problems, and mortality.47 Social support can reverse the unwanted effects of stressful situations and chronic health conditions.48 Various studies have established the fact that social support can affect the HRQoL patients with acute or chronic conditions in general.47-51 However, studies on its association to HRQoL among children and adolescent patients with Leukemia are scanty to non-existing.
Therefore, family dynamics and social support are hypothesized in this current study to be a predictor of HRQoL of pediatric patients with Leukemia. It is then the aim of this study to understand the pediatric Leukemia patients’ family dynamics and social support and their health related quality of life and examine their relationship with each other.
Objectives of the Study
This study aims to examine the association of Health – Related Quality of Life (HRQoL) to the family dynamics and social support among pediatric patients diagnosed with Leukemia.
Specifically, it seeks to:
Assess the family dynamics of the pediatric patients with Leukemia using the Family APGAR;
Identify the perceived social support of the pediatric patients with leukemia in terms of:
Significant other support;
Determine the self – reported and parent – proxy reported Health – Related Quality of Life (HRQoL) among pediatric patients with Leukemia in terms of:
Examine the difference between the self – reported and parent – proxy reported HRQoL among pediatric patients with Leukemia;
Examine the relationship between the family dynamics and social support to the HRQoL among pediatric patients with Leukemia.
This research is a cross – sectional, correlation study.
This current study will include three groups of respondents: the children and adolescent patients diagnosed with Leukemia of any type admitted in the tertiary hospitals in the City of San Fernando in La Union, Philippines, their parents and their siblings. There are three tertiary hospitals in the area namely Lorma Medical Center, Bethany Hospital Inc., and Ilocos Training and Regional Medical Center. Patients aged 5 to 18 years old, male and female, undergoing maintenance phase of treatment, conscious, and responsive will be considered as participants of the study. Parent that provides care to the patient will be asked to report for the parent – proxy reported HRQoL of the patient while both parents will be asked to respond for the family dynamics. Siblings of the patient will be included as respondents for the family dynamics. Purposive sampling technique will be utilized in the study. Patients who will meet the inclusion criteria will be eligible for the study.
Data will be collected using a questionnaire. The questionnaire is a collection of adopted scales from earlier studies which will measure the family dynamics, social support and health related quality of life of the Leukemia patients. The questionnaire will have four parts. Part one will elicit data on the demographics of the patient and family. The profile of the patient will include the gender of the patient, age, diagnosis, date of diagnosis, type of treatment, length of stay in the hospital. On the other hand, the profile of the family will include the number of family members, position of the patient in the family, religion, family income, occupation of each family member, type of residence (rural, urban or sub-urban) and type of housing. The profile of the patients will be answered either by the patient or the parent while the profile of the family will be answered by the parents.
Part two will gather data on the family dynamics. Family dynamics will be measured using the Family APGAR. Family APGAR stands for Adaptability, Partnership, Growth, Affection and Resolve. It is a measure that will assess the perception of the family members to family functioning through examining their satisfaction with the existing relationship. It is a 5 – items scale which was designed to be responded using a 3 – point scale from 0 as “hardly ever” to 2 as “almost always”. The highest score for this measure is 10 and higher scores signify more satisfaction with family functioning. Score lower than 6 will be considered as dysfunction in the family while scores of 6 and above will be considered as normal family function. Previous studies have established a good validity and reliability of the measure with Cronbach’s alpha ranging from 0.80 to 0.85.52-54 The parents, patient and the patient’s siblings will be asked to answer the scale to have a better picture of the family dynamics.
Part three will collect data about the perceived social support of the patients. The Multidimensional Scale of Perceived Social Support (MSPSS) will be adopted. This is a tool designed to measure the three sources of support namely family, friend and significant other. It is composed of 12 items that can be answered using a 7 – point scale from Very Strongly Disagree to Very Strongly Agree. There will be four scores that will be derived from the scale: Family Subscale Score, Friend Subscale Score, Significant Other Subscale Score, and Total Scale Score. Scores will be obtained by summing the individual scores in each scale then divide it with the number of items. Good internal reliability across subject groups and strong factorial validity were reported for the MSPSS by earlier studies.55-57 This will be answered by the patient.
Part four will be the PedsQLTM Measurement Model. It consists of 23-item designed to measure the core dimensions of health as delineated by the WHO and the role (school) functioning. It has a 5 – point scale from never to almost always. It has four dimensions which are physical, emotional, social and school functioning. Scores for each scale as well as the total scale score will be obtained. Internal consistency reliability and validity of the scale was reported to be acceptable.58-60 The patient – reported and parent – proxy reported will be considered for the study.
The questionnaire will be distributed to the respondents and they will be asked to answer honestly. Enough time will be provided for the respondents. The questionnaire will be available both in English and Filipino versions. It will be translated using the forward – backward method. The translated version will be subjected to reliability and validity test to ensure the accuracy of data to be collected.
Ethical clearance will be sought from each ethical committee of the three hospitals. An informed consent will be asked to be signed by the parents of each patient who will signify the permission to be included in the study. The researcher will explain properly the purpose, nature, significance of the study and the expected participation of the respondents to the study. Confidentiality will be assured to each respondent.
Data will be treated using the IBM SPSS Statistics. Both descriptive and inferential statistics will be used. Frequency count will be used for the profile of the respondents. Mean will be used to analyze the family dynamics, social support and health related quality of life. Pearson r correlation will be utilized to examine the relationship between family dynamics and social support to health related quality of life.