International Day of Persons with Disabilities: Unheard Patient Voice

Author: Dr. Kavita Lamror (Global Head, Value and Evidence at Exelra Knowledge Solutions Pvt Ltd)

“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” – Stephen Hawking

The International Classification of Functioning, Disability and Health (ICF) describes the term disability as a hypernym encompassing impairments, activity limitations, and participation restrictions.[1] The Oxford dictionary [2] defines impairment as a weakening of a body function or structure, and an activity limitation as a difficulty encountered by an individual in executing a task or action. A participation restriction on the other hand is an impediment experienced by an individual in their involvement in activities of daily living.

Disability thus transcends our determinate understanding of a health problem. It is a composite interplay of reciprocity between the individual’s internal and external environment. Thus, diagnosing, acknowledging, and overcoming the difficulties faced by individuals with disabilities necessitates provision of interventions to facilitate access to remedial measures as well as to abolish ill-served environmental and social barriers rising from a benignant understanding of disability.

Approximately 15% of the world’s population (ie. more than a billion individuals) suffers from disability, and between 110 million and 190 million of adults have significant difficulties in functioning, according to a World Health Organization (WHO) report [1]. It is notable to observe that the increase in rates of disabilities are correlated with increasing incidence and prevalence of chronic diseases, as well as an ageing population.

While some disabilities are perceptible, others are “hidden/invisible”. The common denominator in these invisible disabilities [3] is the lack of a discernible indicator of a disability and as a consequence, delayed diagnosis and treatment. This spectrum includes a range of disabilities attributable to multitudinous origins: psychiatric (eg. depression), infective (eg. HIV), hormonal (eg. diabetes), genetic (cystic fibrosis), immune-mediated (eg. psoriasis), persistent physical injuries and others. Globally, the largest disease burden comes from cardiovascular diseases which account for 15 percent of the total, followed by cancers of multiple origins (9 percent); neonatal disorders (7 percent); musculoskeletal disorders (6 percent); and mental and substance use disorders (5 percent). [4]

Health economists customarily quantify the burden of disease as health-adjusted life years (HALYs) resultant to mortality and morbidity with measures like quality-adjusted life year (QALY), disability-adjusted life-year (DALY), and healthy life expectancy (HALE). While QALYs are a measure of years lived in perfect health gained, HALE quantifies the number of years of life expected to be lived in good health, and the DALYs are a composite measure of disease burden capturing both premature mortality and prevalence and severity of ill health. [5] In 1992, Erik Nord suggested the metric saved young life equivalent (SAVE) as an alternative to the QALY, using person trade-off technique to measure the reference outcome consisting of life saved and restoration to full health as “value” to the society. [6]

These measures however, have evolved to accommodate computative inputs into economic models submitted to seek approvals from payors, and lack the reputability of being an accurate representation of the patient condition in the real world. Generic and disease-specific patient reported outcome measures (PROMs) capture the impact of disease on health-related quality of life (QoL) and associated disabilities, but these measures have to go beyond the esoteric in discussions involving provision and distribution of health care. For stakeholders in health care to indubitably understand “disabilities” and its impact on society, the rhetoric must involve patients and their comprehension of what these measures mean in their daily life. The need of the hour is to not just establish comprehensive measures to quantify disabilities, but also encourage patients to assimilate and narrate their experiences.

We have to reimagine the discourse on disabilities and aid health care decision-makers in understanding what these measures mean to people:

  • A Global Initiative for Chronic Obstructive Lung Disease (GOLD) [7] score for chronic obstructive pulmonary disorder (COPD) cannot explain the joy of a parent walking around a block with their kid without losing breath
  • A Migraine Disability Assessment (MIDAS) [8] score for migraine sufferers does not communicate the number of music festivals a teenager attended during summers without a disabling episode or the fear thereof
  • A Mini-Mental State Exam (MMSE) [9] for Alzheimer’s patients will be unable to tell us the story of a person still able to recognize their family over dinners and the memories created
  • A National Eye Institute 25-Item Visual Function Questionnaire (NEI–VFQ-25) [10] score will not tell the story of a researcher not giving up on dreams of a successful career due to progressive loss of vision….

Life is a journey and everyone is entitled to an opportunity to live their best! Including patient narrative for creating “value” in health care is imperative to our global goals of sustainable development. While we construct entire systems to reduce an “experience or a patient journey” to a number for ease of economic calculations, the “value” of a life lived with disability gets lost in translation. The culpability of not accommodating the voice of people suffering from disabilities lies with an “ableist” society creating challenges for equitable distribution of resources by viewing disabilities as a “burden”. [11] Limited accessibility to resources initiates a self-perpetuating cycle of unmet needs for people with disabilities and a consequential impact on societies and economies.

It is time we become more inclusive in our research and treat patient voice as the driving force behind creation of robust health care eco-systems. 

“We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”- Franklin D. Roosevelt

Value & Evidence @ Excelra













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