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1

GREAT BRITAIN. Office of population censuses and surveys. Topic statistics ; limiting long-term illness: Prospectus. [s.l.]: Office of Population Censuses and Surveys, 1992.

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2

Baird, Kanaan Susan, ed. Medical crisis counseling: Short-term therapy for long-term illness. New York: W.W. Norton, 1995.

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3

Matt, Commers, ed. Doctors and patients: Strategies in long-term illness. Dordrecht: Kluwer Academic Publishers, 1997.

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4

1941-, Sharpe Michael, ed. Living with a long-term illness: The facts. New York: Oxford University Press, 2006.

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5

Pollin, Irene. Taking charge: Overcoming the challenges of long-term illness. New York: Random House, 1994.

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6

K, Golant Susan, ed. Taking charge: Overcoming the challenges of long-term illness. New York: Times Books, 1994.

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7

EBRI-ERF Policy Forum (1987 Washington, D.C.). Where coverage ends: Catastrophic illness and long-term health care. Washington, DC: Employee Benefit Research Institute, 1988.

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8

Reinhard, Priester, and Totten Annette M. 1964-, eds. Meeting the challenge of chronic illness. Baltimore: Johns Hopkins University Press, 2005.

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9

Kane, Robert L. Meeting the challenge of chronic illness. Baltimore, MD: Johns Hopkins University Press, 2004.

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10

1939-, Handel Maryellen H., ed. Madness and loss of motherhood: Sexuality, reproduction, and long-term mental illness. Washington, D.C: American Psychiatric Press, 1993.

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11

Stroul, Beth A. Community support systems for persons with long-term mental illness: Questions and answers. Rockville, Md: The Program, 1988.

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12

Green, Gill. The end of stigma?: Changes in the social experience of long term illness. Abingdon, Oxon: Routledge, 2009.

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13

Jones, Clare. Limiting long term illness in London: A preliminary analysis of 1991 census results. London: London Research Centre, Demographic and Statistical Studies, 1993.

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14

Gordon, Harley. How to protect your life savings from catastrophic illness and nursing homes: A handbook for financial survival. Boston, MA: Financial Planning Institute, 1990.

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15

Jane, Daniel, ed. How to protect your life savings from catastrophic illness and nursing homes: A handbook for financial survival. 2nd ed. Boston, MA: Financial Planning Institute, 1991.

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16

Gordon, Harley. How to protect your life savings from catastrophic illness and nursing homes: A handbook for financial survival. 3rd ed. Boston, MA: Financial Strategies Press, 1994.

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17

Gan, Li. Health shocks, village elections, and long-term income: Evidence from rural China. Cambridge, Mass: National Bureau of Economic Research, 2006.

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18

Kramer-Kile, Marnie. Chronic illness in Canada: Impact and intervention. Burlington, Mass: Jones & Bartlett Learning, 2012.

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19

Providing employment support for people with long-term mental illness: Choices, resources, and practical strategies. Baltimore: P.H. Brookes, 1995.

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20

Institute, on Rehabilitation Issues (15th 1988 Tampa Fla ). Report from the Study Group on Enhancing the Rehabilitation of Persons with Long-Term Mental Illness. Hot Springs, Ark: Arkansas Research & Training Center in Vocational Rehabilitation, University of Arkansa, Fayetteville, 1988.

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21

Alliance, Long-term Medical Conditions. What we need: The needs of people with long-term illness and of the organisations that support them. London: LMCA, 1998.

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22

Galey, Karen. The needs of people with disabilities: A survey of the needs of people with disabilities and long-term illness. London: Research and Information Services Group, Environment Department, London Borough of Hammersmith and Fulham, 1992.

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23

Robson, Donald J. Making shared care work: Care in the community for patients with long term mental illness : a workbook for primary care teams and workshops. (S.l.): Welsh Council of the Royal College of General Practitioners, 1995.

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24

Chronic physical illness: Self-management and behavioural interventions. Maidenhead: Open University Press, 2009.

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25

The fatal illness of Frederick the Noble. London: Keynes, 1987.

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26

1938-, Hagopian Gloria Ann, ed. Chronic illness in children and adults: A psychosocial approach. Philadelphia: Saunders, 1992.

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27

The caregiver's legal guide to planning for a loved one with chronic illness: Inside strategies to plan for Medicaid, veterans benefits and long-term care. Charleston, SC: Advantage Media Group, 2014.

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28

United States. Congress. House. Select Committee on Aging. Subcommittee on Health and Long-Term Care. Paying the price of catastrophic illness: From accidents to Alzheimer's : hearing before the Subcommittee on Health and Long-Term Care of the Select Committee on Aging, House of Representatives, One hundredth Congress, first session, January 28, 1987. Washington: U.S. G.P.O., 1987.

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29

United States. Congress. House. Committee on Ways and Means. Subcommittee on Health. Catastrophic illness expenses: Hearings before the Subcommittee on Health of the Committee on Ways and Means, House of Representatives, One hundredth Congress, first session, on expanding Medicare to include catastrophic coverage, January 29, March 3, 4, 10, and 30, 1987. Washington: U.S. G.P.O., 1987.

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30

Medical and psychosocial aspects of chronic illness and disability. 3rd ed. Sudbury, Mass: Jones and Bartlett Publishers, 2005.

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31

Medical and psychosocial aspects of chronic illness and disability. Gaithersburg, Md: Aspen Publishers, 1991.

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32

Falvo, Donna R. Medical and psychosocial aspects of chronic illness and disability. 4th ed. Sudbury, Mass: Jones and Bartlett, 2009.

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33

Aging, United States Congress Senate Special Committee on. Empowering patients and honoring individuals' choices: Lessons in improving care for individuals with advanced illness : hearing before the Special Committee on Aging, United States Senate, One Hundred Twelfth Congress, second session, Washington, DC, June 13, 2012. Washington: U.S. G.P.O., 2012.

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34

Erlich, Matthew D., Thomas E. Smith, Ewald Horwath, and Francine Cournos. Schizophrenia and Other Psychotic Disorders. Oxford University Press, 2014. http://dx.doi.org/10.1093/med/9780199326075.003.0004.

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Patients with schizophrenia experience three categories of symptoms: positive (delusions and hallucinations); negative (blunting of affective expression, loss of volition, and apathy); and disorganized (as reflected by a formal thought disorder). A diagnosis of schizophrenia requires that continuous signs of illness, which may include prodromal and residual symptoms, be present for at least 6 months. Research indicates that schizophrenia is likely a neurodevelopmental illness with clear heritable risk factors. Patients with schizophrenia tend to have an illness onset by young adulthood and a generally debilitating and long-term course, but the degree of disability and functional impairment is widely variable. Other illnesses characterized by prominent psychotic symptoms include schizoaffective disorder and delusional disorder. Treatment for psychotic illnesses includes antipsychotic medication and recovery-oriented psychosocial interventions aimed at “psychiatric rehabilitation” wherein patients can learn or relearn skills necessary to live independently and work competitively.
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35

Dienel, Samuel J., and David A. Lewis. Cellular Mechanisms of Psychotic Disorders. Edited by Dennis S. Charney, Eric J. Nestler, Pamela Sklar, and Joseph D. Buxbaum. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190681425.003.0018.

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Cognitive dysfunction in schizophrenia, including disturbances in working memory, is a core feature of the illness and the best predictor of long-term functional outcome. Working memory relies on neural network oscillations in the prefrontal cortex. Gamma-aminobutyric acid (GABA) neurons in the prefrontal cortex, which are crucial for this oscillatory activity, exhibit a number of alterations in individuals diagnosed with schizophrenia. These GABA neuron disturbances may be secondary to upstream alterations in excitatory pyramidal cells in the prefrontal cortex. Together, these findings suggest both a neural substrate for working memory impairments in schizophrenia and therapeutic targets for improving functional outcomes in this patient population.
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36

Hatfield, Catherine, and Tom Dening. Severe and enduring mental illness. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199644957.003.0048.

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Severe and enduring mental illness refers mainly to the long term experience of schizophrenia and psychosis but also to other chronic functional disorders. The prevalence of psychoses in older people is hard to measure but estimates are around 0.5% of the population. Historically many people with long term illness resided in psychiatric hospitals but now most are in the community, receiving variable amounts of support from mental health, primary care, and social services. The physical health of this population is often poor and they receive less treatment and support than other older people with comparable physical health needs. Problems with psychiatric comorbidity (e.g. depression and substance misuse), cognitive impairment and social exclusion are also common. Treatment includes the judicious use of medication, non pharmacological approaches, and social support – especially appropriate accommodation. Positive outcomes can be achieved by a recovery approach that attends to all aspects of the person’s health.
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37

Manseau, Marc W., and Jay Crosby. First Episode Psychosis. Edited by Hunter L. McQuistion. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190610999.003.0012.

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Engaging people experiencing a first episode of psychosis (FEP) in treatment is a priority. The duration of untreated psychosis (DUP) is the period of time between the onset of the FEP and the initiation of adequate treatment; longer DUP is associated with negative outcomes. Coordinated specialty care (CSC) is an evidence-based model that uses a team-based, multidisciplinary approach to engage people early in their psychotic illness in order to improve long-term psychosocial functioning and treatment outcomes. Best practices within CSC include assertive outreach, prescribing of low-dose antipsychotics, shared decision-making, family support, individual psychotherapy, and supported education and employment. Although people who have experienced an FEP may struggle to follow all treatment recommendations, they can still be engaged in their recovery by putting the focus on the individuals’ life goals.
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38

Revival, Crusade for World. Living With Long-Term Illness. Crusade for World Revival, 2005.

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39

Coping with Long-Term Illness. Sheldon Press, 2001.

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40

Burns, Tom, and Mike Firn. Bipolar affective disorder. Edited by Tom Burns and Mike Firn. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780198754237.003.0016.

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This chapter deals with the other major psychotic illness, bipolar affective disorder. Bipolar disorder poses a difficult question for outreach workers, as patients are often well recovered between episodes—so should persisting outreach be provided? We report very good results in severe bipolar disorder where continuity of care has paid off. The chapter also deals with theories of causation and classification. The section on treatment identifies the importance of early admission in hypomania, the use of mood stabilizers, and the value of identifying and agreeing on relapse signatures. It also confirms the value of working hard to strengthen the therapeutic relationship and of psychosocial interventions such as psycho-education. Long-term work with these patients brings home just how persistent and disabling the depressive phases can be.
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41

Fox, Joseph. The Encyclopedia of Long-Term Illness. Carlton Press Corporation, 1988.

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42

Hopkins, Ramona O., Maria E. Carlo, and James C. Jackson. Critical Illness and Long-Term Cognitive Impairment. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199398690.003.0003.

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Evidence from dozens of studies of thousands of individuals suggest that as many as half of critical illness survivors experience significant deficits in memory, executive functioning, attention, and processing speed that persist years after discharge from the intensive care unit (ICU). This chapter reviews the prevalence, characteristics, possible mechanisms, and risk factors for long-term cognitive impairment after critical illness. Some key risks factors—notably, delirium—may be modifiable, whereas others, such as genetic markers, are not. Cognitive impairments are associated with psychiatric disorders, including depression, anxiety, and posttraumatic stress disorder. The impact of critical illness–related cognitive impairment on individuals and society includes financial costs, inability to return to work, impairments in instrumental activities of daily living (financial management, medication management, shopping, home care), reduced quality of life, and caregiver burden. Efforts need to be directed not only at modifying risk factors but also at attempting to prevent, treat, and remediate deficits.
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43

Adhikari, Neill KJ. Critical Illness and Long-Term Outcomes Worldwide. Oxford University Press, 2014. http://dx.doi.org/10.1093/med/9780199653461.003.0002.

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Interest in the global burden of critical illness and its sequelae are growing, but comprehensive data to describe the burden of acute and post-acute illness and the resources available to provide care are lacking. Challenges to obtaining population-based global estimates of critical illness include the syndrome-based definitions of critical illness, incorrect equating of ‘critical illness’ with ‘admission to an intensive care unit’, lack of reliable case ascertainment in administrative data, and short prodrome and high mortality of critical illness, limiting the number of prevalent cases. Estimates of the burden of post-critical illness morbidity are even less reliable, owing to the limited number of observational studies, inaccurate coding in administrative data, and the unclear attributable risk of these morbidities to critical illness. Modelling techniques will be required to estimate the burden of critical illness and disparities in access to critical care using existing data sources. Demands for critical care and post-discharge care for survivors are likely to increase because of urbanization, an ageing demographic, and ongoing wars, disasters, and pandemics, while the ability to assume the cost of increased critical care may be limited due to economic factors. Major public health questions remain unanswered regarding the worldwide burden of critical illness and its sequelae, variation in resources available for treatment, and strategies that are broadly effective and feasible to prevent and treat critical illness and its consequences.
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44

Costello, John. Caring for Someone with a Long-Term Illness. Manchester University Press, 2009.

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45

Caring for Someone with a Long-Term Illness. Manchester University Press, 2009.

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46

C, White Alexander, and Fanburg Barry L, eds. Prolonged critical illness: Management of long-term acute care. Philadelphia: Saunders, 2001.

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47

Where coverage ends: Catastrophic illness and long-term health care. Employee Benefit Research Institute, 1988.

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48

Carrier, Judith. Managing Long-term Conditions and Chronic Illness in Primary Care. Routledge, 2015.

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49

Carrier, Judith. Managing Long-term Conditions and Chronic Illness in Primary Care. Routledge, 2009. http://dx.doi.org/10.4324/9780203881316.

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50

Carrier, Judith. Managing Long-term Conditions and Chronic Illness in Primary Care. Routledge, 2015. http://dx.doi.org/10.4324/9780203077306.

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