Suggestion: Universal Quality of Life Measurement System
Caleb Nguyen
Health Communication and Advocacy (HLTH 634 – D01)
April 7, 2019
Introduction:
The purpose of writing this review is to describe, in detail, the importance of health-related quality of life and well-being and why the intervention program that the Health-Related Quality of Life Rendezvous is proposing is necessary to combat such an issue. Health-related quality of life and well-being is, generally, a multi-dimensional concept that includes physical, mental, social, and emotional aspects all in the pursuit of positively impacting one’s health status and what influences it has on one’s quality of life.1 To clarify, the problem that the intervention program would be attempting to alleviate would be the decrease in one’s quality of life once they have been infected or afflicted with a disease or disorder. Overcoming a disease or a disorder is already a massive hurdle in one’s life, so having it affect one’s life further emotionally, psychologically, and physically could easily overwhelm someone even well after the disease has subsided. This planned program will help provide support financially, emotionally, physically, or psychologically, until the patient of the health-related problem can confidently determine that they can get back on his or her own two feet again. In regards to the organization of this review, this review will take a brief look into the health-related quality of life issues of various different health-related issues before looking deeper into the concepts, measurements, and general state of the health-related quality of life within the United States. The review will then compare and contrast the issues of the quality of life amongst the various health issues, determine which measurements and concepts the program would most benefit and serve the program (in terms of both accuracy and consistency), and estimate how effective such a program would be in the long run. It should be noted that, due to how broad the target population for the intervention program that is being proposed is, and the focus on combating the potential decreasing levels of quality of life in general as opposed to that of a specific disease or treatment, the articles selected to be used for this review have been, mostly, at random. The same can be said for the sources discussing the concepts and measurements of health-related quality of life. In the end, the intervention program being proposed is attempting to alleviate all potential victims of a potential decrease in quality of life due to health-related issues, and figuring out what many different health-related problems have in common and how they are usually measured and looked at will hopefully produce an all-encompassing and effective initiative that will alleviate all health-related victims of any possible adverse issues that their health-related problems could have possibly brought upon them.
Body of Evidence:
In “The Frequency, Clinical Course, and Health Related Quality of Life in Adults with Gilbert’s Syndrome: A Longitudinal Study,” a study was conducted so that the frequency, clinical course, genetic profile, and health related quality in Egyptian adults could be properly investigated.2 Subjects fulfilling the requirements for the cross-sectional study were prospectively followed for clinical features, risk factors for hyperbilirubinemia, health related quality of life, vitamins assessment, and UGT1A1 polymorphisms.2 In the end, in regards to quality of life, it was concluded that, in a substantial percentage of subjects with Gilbert’s Syndrome, episodes of jaundice are associated with other symptoms and nutritional deficiencies which result in impairment of the overall health-related quality of life of the patients, with, “Screening, counseling, monitoring and individualized health care… recommended for subjects with GS [Gilbert’s Syndrome in the setting of anesthesia, pregnancy, treatment with DAAs [direct antiviral therapy], deliveries, surgery and weight loss plans”.2
In “Difference and Relation between Adolescents’ and Their Parents or Caregivers’ Reported Oral Health-Related Quality of Life Related to Orthodontic Treatment: A Prospective Cohort Study,” a study was conducted to investigate the difference and correlation between, “between the ratings given by children and their parents or caregivers on their oral health-related quality of life (OHRQoL) before, during and after orthodontic treatment.”3 Within this ongoing observational prospective cohort study, children within a certain age group were given questionnaires throughout various points of their orthodontic treatments, with the oral health-related quality of life being scored using the Child Perception Questionnaire and the Parental-Caregiver Perception questionnaire, with the self-perception of oral aesthetics being evaluated with the Oral Aesthetic Subjective Impact Scale, “ in addition to the aesthetic component (AC) of the Index of Orthodontic Treatment Need (IOTN).”3 In the end, the study came to the conclusion that parents and caregivers scored lower than children in all questionnaires, suggesting that there may be an age factor when it comes to one’s perception of quality of life and treatment.
In “Changes in Health-Related Quality of Life of Chinese Populations Measured by the EQ-5D-3 L: A Comparison of the 2008 and 2013 National Health Services Surveys,” a study was conducted with the goal of identifying the changes of the EQ-5D results in the Chinese populations.4 Various data were collected through national surveys that included the Q-5D-3 L since 2008, allowing those conducting the study to compare “the differences between the 2008 and 2013 surveys in the percentage of reported problems, visualanalogue scale (VAS) scores, and the EQ-5D-3 L utility index derived from the national value sets.”4 In the end, “reported problems in self-care (3.3% vs. 3.1%), usual activities (4.8% vs. 4.6%) and anxiety/depression (6.4% vs. 5.3%) decreased, whereas reported problems in mobility (5.1% vs. 5.9%) and pain/discomfort(9.3% vs. 12.6%) increased significantly (p< 0.05) in 2013,”4 and higher education, income, and residential location were associated with better Q-5D-3 L results, reinforcing the belief that socioeconomic and residential disparities contribute to the health-related quality of life disparities (at least, in China).
In “Health-related Quality of Life Assessment for Patients with Advanced or Metastatic Renal Cell Carcinoma Treated with a Tyrosinekinase Inhibitor Using Electronic Patient-Reported Outcomes in Daily Clinical Practice (QUANARIE trial): Study Protocol,” a study was conducted to “evaluate the use of HRQoL assessment in daily clinical practice for patients with mRCC treated with TKI using electronic patient-reported outcomes (e-PRO).”5 The study was an interventional, prospective, multicentre trial, with the primary objective being, “to assess the proportion of patients having good compliance with Routine Electronic Monitoring of HRQoL (REMOQOL)during the first 12 months.”5 While no conclusion was ultimately made within the article illustrating the study, as the article was written with the intensive purpose of displaying “whether REMOQOL is feasible on a large scale… whether patients are receptive to this new practice… how real-time multidimensional evaluation of patient perception can help physicians in their daily practice and how they used it in conjunction with other clinical information to manage patient care,”5 the article also made the statement that, “integration of HRQoL assessment into daily clinical care faces multiple barriers such as material and IT limitations and implementation of an intervention that may increase the workload of already busy physicians or a training physician who is not familiar with interpreting HRQoL measures,”5 highlighting the fact that health-related quality of life issues are still considered much like an afterthought, at least compared to actually curing a patient or preventing a disease.
In “Evaluation of Health-Related Quality of Life after Total Hip Arthroplasty: A Case-Control Study in the Iranian Population,” a study was conducted to evaluate the health-related quality of life of patients after total hip arthroplasty.6 Using a case-control study, the health-related quality of life of many who had taken total hip arthroplasty were compared to that of a reference population, with a 36-item short-form health survey to help evaluate the results.6 In the end, while total hip arthroplasty is considered a highly respected orthopedic practice, “it is associated with remarkable reduced HRQoL in Iranian population when compared with the reference population,”6 implying that quality of life is different for different populations.
In “Health-Related Quality of Life as Predictor for Mortality in Patients Treated with Long-Term Mechanical Ventilation,” a study was conducted in order to examine whether severe respiratory insufficiency sum scores and related subscales are associated with mortality in long-term mechanical ventilation patients.7 This study was conducted through a postal questionnaire, with “SRI score is associated with mortality in LTMV-treated patients”7 and the article proposing that SRI should be used daily with regular follow-ups and that SRI should be considered as the standard for health-related quality of life in trials meant to study various intervention methods.7
When discussing the concepts and measurements for health-related quality of life, the CDC proposed that genes, personality, age, gender, income, work, and one’s relationships were correlated determinants of individual-level well-being8 and reinforced the idea that quality of life could be measured through questionnaires, as well as a unique method of calculating the number of unhealthy days within a thirty day period.9 Within “A Systematic Review: How to Choose Appropriate Health-Related Quality of Life (HRQOL) Measures in Routine General Practice?”, came to the conclusion that, “HRQOL is a multidimensional concept, and different aspects of quality need different methods of measurement,”10 and that, if the situation called for it, different methods can be measured at the same time to gauge two different aspects of a person’s condition.10 Such measures may be necessary, as according to “Health-Related Quality of Life — United States, 2006 and 2010”, various negative health practices could easily add to one’s lessening of their own quality of life, such as smoking and lack of exercise and physical activity.11
Summary and Conclusion:
In the end, health-related issues, both during the actual health-related issue and after said issue has passed, can easily affect one’s quality of life to the point where one’s measured quality of life is considered low, which should not be the case for anybody. When one is cured, they should be able to resume their lives back to the way it used to be, not to be cursed by the experience forever. Most, if not all, of the studies focused on actually measuring the quality of life within their populations used questionnaires or surveys of some kind, though they admittedly did not use the same standards. Perhaps a universal way of measuring quality of life could be developed so that results of such studies could be easier to compare with one another, as according to the CDC, there are certainly methods that can be used that are universal enough that any population, suffering under any disease or health-related issue, could do with ease. In order to help as many people as possible with this intervention program, a universal quality of life measurement must be established so that no matter what affliction they possess, the patients who need the help the most will always get the help they urgently need.
Health-Related Quality of Life Rendezvous 