Health Related Quality of Life Relationship with Family

wellness Related Quality of Life blood with FamilyAssociation of Health Related Quality of Life to Family Dynamics and Social Support among Pediatric Patients with Leukemia in Tertiary Hospitals in Northern PhilippinesJonas P. CruzAbstractBackground of the instruct Leukemia is the most prevalent pubic louse affect baby birdren around the world but majority of the cases argon idiopathic in nature. Generally, patients with Leukemia experience poorer wellness relate feature of liveliness comp ared to the general population. Though a wide interest in studying the wellness related quality of incite of these character references of patients where on the lime light in the recent age, none of these work foc employ on examining the relationship of the HRQoL to the family dynamics and social conduct of the patients. This study aims to take in the association of Health Related Quality of Life (HRQoL) to the family dynamics and social financial incarnate among pediatric pat ients diagnosed with Leukemia. bod This research is a cross sectional, correlation study.Method A questionnaire with four diverges forget be used to collect data on demographic data of the patients and their family, their family dynamics, social fend for and wellness related quality of life. information ordain be gathered from pediatric patients aged 5 to 18 years with Leukemia, their parents and siblings. Data result be treated utilize the IBM SPSS Statistics. Both descriptive and inferential statistics will be used.Background of the StudyLeukemia 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 relative 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, childr en 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 figure of speech of deaths caused by dengue fever 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 emeritus, 5 to 9 years old and 10 to 14 years old, respectively. This is an alarming shift since in the past years Leukemia was non part of the list.4 In a recent study, childhood leukemia relative survival in the Philippines was found to be tear down (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 wi th 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 give-and-take modalities, financial constraints and unawareness.5-9In a oecumenical perspective, therapy has noticeably enhanced over the past decades and the overall rate of survival among children with Leukemia has alike increased.10-12 While the prospect of leukemia in children has improved dramatically, so as the rise of clinical interest in understanding the wellness 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 substitute account and clinician account 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- cosmos of childhood Leukemia patients are importantly 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 issuing 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 touched. 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 accept shown poor HRQoL17 however, relapsed survivors reported l ower general health compared to non-relapsed survivors24.Factors affecting the quality of life were likewise 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 much(prenominal) as chemotherapy and the use of Dexamethasone which was reported to cause lower HRQoL.14,25-27 Impaired overall rest period 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 Childrens pain and fatigue over three age 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 HRQo L 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.33Though 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 industrial plant focused on examining the relationship of the HRQoL to the family dynamics and social support of the patients. Some of the past research studies withstand focused on the impact of taking care of a child with Leukemia to the quality of life of the phencyclidine 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 neer attempted.Family dynamics are the interaction between members of the family as well as the differe nt relationships that is present inside 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 undivided perceptual experiences 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 centre 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 noetic 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, goodness 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.45,46Studies 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 cast-off(prenominal) effects of stressful situations and chronic health conditions.48 Various studies have est ablished 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 youthful 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 StudyThis 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 pass judgment the family dynamics of the pediatric patients with Leukemia using the Family APGARIdentify the comprehend social support of the pediatric patients with leukemia in impairment ofFamily support,Friend supportSignificant other supportDetermine the self reported and parent representative reported Health Related Quality of Life (HRQoL) among pediatric patients with Leukemia in terms ofPhysical Functioning, ruttish Functioning,Social Functioning,School FunctioningExamine the difference between the self reported and parent deputy reported HRQoL among pediatric patients with LeukemiaExamine the relationship between the family dynamics and social support to the HRQoL among pediatric patients with Leukemia.DesignThis research is a cross sectional, correlation study.ParticipantsThis 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 checkup Center, Bethany Hospital Inc., and Ilocos Traini ng 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 include as respondents for the family dynamics. Purposive sampling technique will be utilized in the study. Patients who will encounter the inclusion criteria will be eligible for the study.Data CollectionData will be collected using a questionnaire. The questionnaire is a collection of adopted shells 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 write of the patien t will include the gender of the patient, age, diagnosis, fitting 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 get over which was designed to be responded using a 3 point scale from 0 as hardly ever to 2 as o r so always. The highest score for this measure is 10 and higher scores signify more satisfaction with family functioning. realise 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 reliableness of the measure with Cronbachs alpha ranging from 0.80 to 0.85.52-54 The parents, patient and the patients 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 resist to Very Strongly Agree. There will be four scores that will be derived from the scale Family Subsc ale 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 respondent s 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 self-referent method. The translated version will be subjected to reliability and validity test to ensure the accuracy of data to be collected.Ethical ConsiderationEthical clearance will be sought from each ethical direction 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 justly 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 compendData 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.