Quality of Life is Key

The quality of life is more important than life itself."—Alexis Carrel

The American system of health care is by and large driven by government and insurance reimbursement policies. They favor illness and problem-focused care. Training in and concern for psychosocial factors that affect health are limited, and in some instances, disregarded as unimportant.

However, more and more attention is being paid to the significance of maintaining and restoring a positive quality of life for individuals suffering from disease and/or disability. This is true not only in long-term settings but also during the acute phase of a health crisis. There is mounting evidence that psychosocial factors may have more to do with ultimate outcome than the level of physical independence and functioning after a stroke or disabling diagnosis.

The term quality of life, or QOL as it is commonly referred to in scientific literature, is complex and encompasses several dimensions of life. The factors previously discussed, social support, family support, the individual's experience of disease and disability, hope, happiness etc. contribute to QOL. All aspects of physical, functional, psychological and social health contribute to any given person’s QOL. What matters is how all of the contributing factors are perceived by the individual experiencing them.

In the Center’s model, QOL factors become the center of attention for all activities and interactions. The warm and friendly environment and the influence of peer support assist those whose inclination is to perceive their lives negatively to move toward more positive perceptions.

In order to better understand quality of life factors at the Center and to prepare for the possibility of eventual scientifically grounded research, Caroline Bliss-Isberg took a one semester sabbatical leave in 1998 to develop a method of measuring the impact on quality of life that students experienced at the Center.

After reviewing the literature on measurement, it became obvious that almost all of the well-validated and reliable measures, that were consistently used in measuring rehabilitation outcomes, were too low level and restricted to be used to measure QOL outcomes at the Center.  Most focused on restoration of very basic ADLs (activities of daily living), mobility and simple communication. Inferences about QOL were based on functional outcomes even though research has found that QOL outcomes cannot be predicted from functional status.

Contacts at Stanford University were extremely helpful in directing her to more appropriate measures. Dr. Kate Lorig, who had done some early research over a decade ago at the Center, was acutely aware of the constraints that language disability and decreased attention span placed on evaluation and measurement. With the assistance of Dr. Lorig and of Dr. Janine Giese-Davis, 12 measures having scientifically acceptable validity and reliability were chosen. These met the following criteria:

  • they are relatively brief,
  • they have similar scoring patterns,
  • they are simply worded,
  • they require minimal reading,
  • they can be administered in less than 1/2 hour.

The measures have been pre-tested by several different examiners on a variety of students with different patterns of impairment. Most students have been able to comprehend and respond appropriately to individual test items. The outcomes that are measured appear to be congruent with expectations and appear to accurately reflect QOL factors.

It is hoped that an enthusiastic graduate student or researcher will take advantage of this preliminary work and conduct quality of life research at the Center to test the efficacy of the model. The sabbatical report is available from the Cabrillo College library and the test battery obtained by contacting the Center.

Informal Research

Interviews with students and caregivers at the Center revealed the following needs that had to be satisfied in order to achieve a positive quality of life when living with their disability:

  • To feel valued.
  • To communicate and affiliate with individuals who were experiencing similar impairments, disabilities and environmentally caused handicaps.
  • To find accessible cognitive stimulation and have it available.
  • To overcome embarrassment about being  disabled.
  • To have hope renewed.
  • To not be patronized.
  • To acquire knowledge and information about resources.
  • To reduce stress and discover safe ways of releasing anger
  • To experience humor, fun and pleasure.
  • To escape from loneliness and isolation.
  • To receive assistance with depression

Scientific Research

Fortunately, there is increasing interest in the scientific community in the quality of life outcomes of rehabilitation. As people with disabilities live longer and the impact of psychosocial factors on functional outcomes becomes more apparent, it is vitally important that we learn how best to influence a positive quality of life outcome for individuals living with stroke and acquired disability. A glance at the reference section below demonstrates that most research in the area has been recent. 

A sample of findings includes:

  • The development in Italy of a scale that is now widely accepted in Europe and the United States to measure Health Related Quality of Life (hrQOL).
  • Research indicating that functional disability assessment and quality of life assessment are equally important in measuring outcomes of rehabilitation; and that QOL factors may be more relevant to the patient.
  • The finding that stroke survivors do not necessarily return to a normal social life, even when their physical disability ceases to be a serious obstacle.
  • Personal and family adjustment in relation to stroke is being increasingly addressed. It is now accepted that the impact of these factors is profound and that they are predictive variables in their own right. There is no doubt now that psychosocial factors are not side effects, but persist on their own after good to excellent physical functional recovery.
  • Psychological well being after rehabilitation does not appear to be influenced significantly by social situation, severity of impairment or disability. Depression, however, is wide spread, long-lasting and is definitely related to quality of life outcomes.
  • Individual attitudes and beliefs, family factors and family caregiver adjustment and hardiness (a constellation of personality features) are key determinants of eventual positive QOL outcome.
  • The identification of depression, social support and functional status as predictors of QOL suggest the need to assist stroke survivors in coping and in maintaining and strengthening their support systems.
  • It seems that the severity of stroke and disability has a clear-cut impact on deterioration of the quality of life, but even with this in mind the most important variable seems to be the patient's subjective experience of disability and insufficiency. In addition to conventional rehabilitation more attention should be paid to quality of life.
  • QOL after stroke is probably as important as the functional level.   Unless QOL is considered, any statistics used in analyzing the benefits of rehabilitation treatment are incomplete and misleading. Research indicates that despite good recovery in terms of discharge from the hospital, ADL, and return to work, the quality of life of most patients was not restored to the pre-stroke level. Most notable effects are on leisure activities and socialization. The most important variable appears to be the patient's subjective experience of disability and insufficiency. Patients need encouragement, psychological support, and adjustment training after a stroke and enough neuropsychological information to enable them to be realistic in their self evaluation.
  • Since returning to the previous life style and activities is rather improbable, changing how the situation is perceived appears to be the most effective way of coping, in order to reach a state of acceptance/resignation favorable to an optimal quality of life.

QOL References

Baker GA. "Health-related quality-of-life issues:  optimizing patient outcomes." Neurology 1995 March 45(Suppl 2):S29-S34.

Bandura, A. "Self-efficacy mechanism and physiological activation and health promoting behavior."  In V.L. Madden (Ed.) Neurobiology of learning, emotion and affect (pp. 229-269) Raven, New York.

Bandura, A. Social foundations of thought and action. Englewood Cliffs NJ;Prentice Hall 1986.

Cameron JI, Cheung AM, Streiner DL, Coyte PC, Stewart DE.   Stroke survivors' behavioral and psychologic symptoms are associated with informal caregivers' experiences of depression. Arch Phys Med Rehabil. 2006 Feb;87(2):177-83. 

Cruice M, Worrall L, Hickson L.   Perspectives of quality of life by people with aphasia and their family: suggestions for successful living. Top Stroke Rehabil. 2006 Winter;13(1):14-24.

deHaan R; Aaronson N; Limburg M.; Hewer Rl; van Crevel H.  "Measuring quality of life in stroke." Stroke 1993;24:320-327.

deHaan R; Horn J; Limburg M; Limburg M; Van Der Meulen J; Bossuy P.  "A comparison of five stroke scales with measures of disability, handicap, and quality of life." Stroke 1993;24:1178-81.

Gill, TM, Feinstein AR.  A critical appraisal of the quality of quality-of-life measurements. JAMA 1994:272:619-626.

Gresham GE. Stroke outcome research. Stroke 1986;17:358-360.

Haacke C, Althaus A, Spottke A, Siebert U, Back T, Dodel R.   Long-term outcome after stroke: evaluating health-related quality of life using utility measurements. Stroke. 2006 Jan;37(1):193-8. Epub 2005 Dec 8.

Indredavik MD: Bakke F.; Slørdahl SA; Rokseth R; Håheim LL.  "Stroke unit treatment improves long-term quality of life, a randomized controlled trial." Stroke 1998 5;(29):  895-898.

King RB. "Quality of life after stroke." Stroke 1996;27:1467-72.

Kobasa SC, MaddiSR, Kahn S: Hardiness and health: A prospective study. J Pers Soc Psychol 1982;42:168-177.

Kong KH, Yang SY.   Health-related quality of life among chronic stroke survivors attending a rehabilitation clinic. Singapore Med J. 2006 Mar;47(3):213-8.

Kwon S, Duncan P, Studenski S, Perera S, Lai SM, Reker D.   Measuring stroke impact with SIS: construct validity of SIS telephone administration. Qual Life Res. 2006 Apr;15(3):367-76.

Labi, MLC, Phillips, F and Gresham, GE. Psychosocial disability in physically restored long-term stroke survivors. Archives of Physical Medicine and Rehabil. 1980;61:561-565.

Lai SM, Studenski S, Richards L, Perera S, Reker D, Rigler S, Duncan PW.   Therapeutic exercise and depressive symptoms after stroke. J Am Geriatr Soc. 2006 Feb;54(2):240-7.

Larson J, Franzen-Dahlin A, Billing E, Arbin M, Murray V, Wredling R.   Predictors of quality of life among spouses of stroke patients during the first year after the stroke event. Scand J Caring Sci. 2005 Dec;19(4):439-45.

Lenker, S.S., Lorig, K. & Gallagher, G. (1984) Reasons for the lack of association between changes in health behavior and improved health status:  An explanatory study.  Patient Education and Counseling 6(2), 69-72.

Lorig, K.R., Chastain, R.L., Ung, El, Shoor, Slk & Holman, H.R. (1989) Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis.  Arthritis and Rheumatism, 32, 37-44.

Lorig, Kate, Stewart, Anita, Ritter, Philip, Gonzalez, Virginia, Laurent, Diana, and Lynch, John.  Outcome Measures for Health Education and other Health Care Interventions. Sage Publications, International Educational and Professional Publisher, Thousand Oaks, London New Delhi,  1996.

Maddigan SL, Feeny DH, Majumdar SR, Farris KB, Johnson JA.   Understanding the Determinants of Health for People With Type 2 Diabetes. Am J Public Health. 2006 Jul 27;

Naess H, Waje-Andreassen U, Thomassen L, Nyland H, Myhr KM.   Health-related quality of life among young adults with ischemic stroke on long-term follow-up. Stroke. 2006 May;37(5):1232-6. Epub 2006 Apr 6.

Niemi ML; Laadsonen R; Kotila M; Waltimo O.  "Quality of Life 4 years after stroke." Stroke 1988 19:1101-1107.

Nys GM, van Zandvoort MJ, van der Worp HB, de Haan EH, de Kort PL, Jansen BP, Kappelle LJ.   Early cognitive impairment predicts long-term depressive symptoms and quality of life after stroke. J Neurol Sci. 2006 May 19.

Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006 May;35(3):273-9.

Pistoia F, Govoni S, Boselli C.   Sex after stroke: a CNS only dysfunction? Pharmacol Res. 2006 Jul;54(1):11-8.

Ryan T, Enderby P, Rigby AS.   A randomized controlled trial to evaluate intensity of community-based rehabilitation provision following stroke or hip fracture in old age. Clin Rehabil. 2006 Feb;20(2):123-31.  PMID: 16541932

Schlote A, Richter M, Frank B, Wallesch CW.  A longitudinal study of health-related quality of life of first stroke survivors' close relatives. Cerebrovasc Dis. 2006;22(2-3):137-42. Welmer AK, von Arbin M, Widen Holmqvist L, Sommerfeld DK.   Spasticity and its association with functioning and health-related quality of life 18 months after stroke. Cerebrovasc Dis. 2006;21(4):247-53.

Shah MV.   Rehabilitation of the older adult with stroke. Clin Geriatr Med. 2006 May;22(2):469-89; xi. Review.

Stewart, Anita L. and Ware, John E. Eds. Measuring Functionaing and Well-Being, The Medical Outcomes Study Approach Duke University Press Durham (NC) 1992.

von Steinbuechel N, Richter S, Morawetz C, Riemsma R.   Assessment of subjective health and health-related quality of life in persons with acquired or degenerative brain injury. Curr Opin Neurol. 2005 Dec;18(6):681-91. Review.

Wolcott LE: Rehabilitation and the aged. In Reichel W (ed.): Clinical Aspects of Aging. Baltimore, Williams and Wildins, 1983, pp 182-204.           

Wolfe CDA; Taub NA; Woodrow EJ; Burney PGJ.  "Assessment of scales of disability and handicap for stroke patients." Stroke 1991;22:1242-1244.

 

We are grateful to Congressman Sam Farr and the US Department of Education,
Office of Special Education and Rehabilitation for the funding support that made this website possible.