
Health and Quality of Life
Historically, the term health referenced physical health and the absence of disease. The World Health Organization's 1948 constitution established a new way of viewing health by including reference to the individuals's overall state of being, defining health as, "A state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity."(1)
The concept of health further expanded in the 1960s and 70s to incorporate quality of life (QOL)(2); sometimes referred to as health-related quality of life (HRQOL).(3) Research in this specialised field has produced a strong body of information from which it is possible to gain an understanding of the aspects of life salient to those facing acute, chronic and life-limiting illness. The impact of prolonged and difficult medical treatment is central to much of the QOL research. Elkington acknowledges this in his discussion of the ethics of medical treatment,
"What every physician wants for every one of his patients old or young, is not just the absence of death but life with a vibrant quality that we associate with a vigorous youth. This is nothing less than a humanistic biology that is concerned, not with material mechanisms alone, but with the wholeness of human life, with the spiritual quality of life that is unique to man. Just what constitutes this quality of life for a particular patient and the therapeutic pathway to it often is extremely difficult to judge and must lie with the consciousness of the physician."(4)
Quality of life (QOL) assessment is a central component of patient care in the palliative setting. While there are numerous tools for assessing quality of life QOL in both healthy individuals and in patients facing acute, chronic and life-limiting illness, there is no single universally accepted definition of QOL.(5) Across the research the recurring themes in the assessment domains important to patients are:
» Emotional
» Cognitive
» Healthcare
» Physical
» Personal autonomy
» Preparatory
» Social
» Spiritual
However, no one instrument includes all eight domains for patients with progressive, life-limiting illness.(5) Before reading on please click here to view BJ Miller describe "What really Matters at the End of Life" in his motivating TED talk.
Validated Tools for Assessing Quality of Life
The original tool for measuring QOL was termed Spitzer’s QL-Index.(6) The Index proposed the QOL variables should include physical, social, and emotional function; attitudes to illness; personal features of patients’ daily lives, including family interactions; and the cost of illness. The Tool gathered information on responders' activities, self-care, general health, social support, and outlook on life.
The Standard Form 36 (SF-36®) was developed as part of a medical outcomes study in 1995 and is now one of the most accepted generic QOL Measures.(7) Click here to view the SF-36 Health Survey.
The SF-36 poses 36 questions across eight domains. Answers are scored using a scoring guide to provide “domain” scores for:
» Emotional well-being
» Energy/fatigue
» General health
» Pain
» Physical functioning
» Role limitations due to physical health
» Role limitations due to emotional problems
» Social functioning
as well as summary scores for mental and physical health plus a single health utility index.
Other survey instruments have been developed to measure quality of life in specific diseases or for specific types of interventions. Examples include:
questionnaires should be used.14 It further explains that generic tools lack sensitivity to reflect patients' problems and differences in QoL between subgroups according to diseases or during the follow-up. Specific questionnaires are developed from patients' symptoms, limitations, and problems in their daily life and are more sensitive to changes. More specific questionnaires can be based on the condition (head and neck cancer) or can be specific the home enteral nutrition as a treatment modality regardless of medical diagnosis (e.g. Nutriqol). However the ESPEN guidelines also indicated that the Nutriqol is “lowly sensitive to changes”, but may be still be useful.
Validated Tools for Assessing Activities of Daily Living (ADL)
Reporting Functional Status
The Nutrition Care Process and Terminology (NCPT) includes terms that provide the opportunity for dietitians to specifically report their assessment of a patient’s ability to maintain daily living activities most directly related to nutrition. The Nutrition Assessment/Monitoring and Evaluation Terminology includes the following Nutrition-related ADLs and IADLs (FH-7.2) terms in the Physical Activity and Functioning (FH-7) domain. The reference sheet includes the following examples of indicators:(19,20)
References
- World Health Organization. WHO. Definition of Health. Constitution of the World Health Organization. 2006. www.who.int/governance/eb/who_constitution_en.pdf
- Marcel WM. Definitions of Quality of Life: What Has Happened and How to Move On. Top Spinal Cord Inj Rehabil. 2014 Summer; 20(3): 167–180. Accessed 1 February 2018. Available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257148/
- Centers For Disease Control and Prevention. CDC. Health-Related Quality of Life (HRQOL). 2016; Accessed 1 February 2018. Available from: https://www.cdc.gov/hrqol/concept.htm.
- Elkington JR. Medicine and quality of life. Ann Intern Med. 1966; 64: 711–714.
- McCaffrey N, Bradley S, Ratcliffe J, Currow DC. What Aspects of Quality of Life Are Important From Palliative Care Patients' Perspectives? A Systematic Review of Qualitative Research. J Pain Symptom Manage. 2016; 52: 318-328
- Spitzer WO, Dobson AJ, Hall J, et al. Measuring the quality of life of cancer patients. A concise QL-Index for use by physicians. J Chronic Dis. 1981;34:585–597.
- RAND Health. 36-Item Short Form Survey (SF-36) Scoring Instructions. Accessed 27 January 20 Available from: www.rand.org/health/surveys_tools/mos/36-item-short-form/scoring.html.
- RAND Health. Kidney Disease Quality of Life Instrument (KDQOL). Accessed 27 January 20 Available from: www.rand.org/health/surveys_tools/kdqol.html.
- Trikkalinou A, Papazafiropoulou AK, Melidonis A. Type 2 diabetes and quality of life. World J Diabetes. 2017; 8(4):120-129.
- Wheelwright SJ, Hopkinson JB, Darlington AS, et al. Development of the EORTC QLQ-CAX24, A Questionnaire for Cancer Patients With Cachexia. J Pain Symptom Manage. 2017; 53(2):232-242.
- Cuerda MC, Apezetxea A, Carrillo L, et al. Development and validation of a specific questionnaire to assess health-related quality of life in patients with home enteral nutrition: NutriQoL® development. Patient Prefer Adherence. 2016; 10:2289-2296.
- Joshi VD, Mooppil N, Lim JF. Validation of the kidney disease quality of life-short form: a cross-sectional study of a dialysis-targeted health measure in Singapore. BMC Nephrol. 2010;11:36.
- Barr J, Schumacher G. Using focus groups to determine what constitutes quality of life in clients receiving medical nutrition therapy: first steps in the development of a nutrition quality-of-life survey. J Am Diet Assoc. 2003; 103(7):844-851.
- Bischoff SL, et al. ESPEN practical guideline: Home enteral nutrition. Clinical Nutrition 41 (2022) 468-488. Available at https://doi.org/10.1016/j.clnu.2021.10.018
- Noelker LS, Browdie R. Sidney Katz, MD: a new paradigm for chronic illness and long-term care. Gerontologist. 2014;54(1):13-20.
- Shelkey M, Wallace M. Katz Index of Independence in Activities of Daily Living (ADL). General assessment series. 2012; Accessed 2 January 2018. Available from: https://consultgeri.org/try-this/general-assessment/issue-2.pdf.
- Instrumental Activities of Daily Living (ADL) Scale. Occas Pap R Coll Gen Pract. 1993; (59):25. SHOULD THIS BE: Nouri F, Lincoln NB. An extended activities of daily living scale for stroke patients. Clinical Rehabilitation. 1987; (1)301-5.
- Academy of Nutrition and Dietetics. Nutrition-Related Activities of Daily Living and Instrumental Activities of Daily Living (FH-7.2). 2017; Accessed 2 January 2018. Available from: https://www.ncpro.org/pubs/idnt-en/codeFH-7-2.
- Academy of Nutrition and Dietetics. Nutrition terminology reference manual (eNCPT): Dietetics language for nutrition care. 2017; Accessed 14 August 2017. Available from: www.ncpro.org
- Academy of Nutrition and Dietetics. Nutrition Terminology Reference Manual (eNCPT): Dietetics Language for Nutrition Care. Assessment & Monitor/Evaluation. 2017; Accessed 2 January 2018. Available from: https://www.ncpro.org/pubs/idnt-en/page-015.
