Carga de la enfermedad crónica para los sujetos implicados en el cuidado

gloria mabel carrillo gonzalez, Sonia Carreño Moreno, Lorena Chaparro Díaz, Olga Janeth Gómez Ramírez, Beatriz Sánchez Herrera

Resumen


Resumen
Objetivo: determinar el significado que se ha dado al concepto de carga de la enfermedad crónica no transmisible en pacientes, cuidadores familiares, profesionales del área de la salud e instituciones prestadoras de servicios de salud. Metodología: revisión realizada mediante las bases de datos LILACS, Sage, Willey online Library, Scopus, Bireme, Scielo, ScienceDirect, PubMed, Cuiden y Proquest. Resultados: Se encontraron 538 artículos relacionados de los cuales se seleccionaron 58 para el análisis, agrupados en tres categorías: esfuerzo físico, esfuerzo psicosocial y esfuerzo económico adicional. Conclusiones: el significado de carga de la enfermedad crónica es construida entre pacientes y cuidadores desde la vivencia y los impactos en su ámbito privado, es decir en lo personal y familiar. Los profesionales de salud y las instituciones reconocen la importancia de la vivencia de la enfermedad en el paciente y la familia; sin embargo, dan prioridad al impacto económico que la carga tiene sobre las mismas instituciones y los sistemas de salud.

 

Abstract
Objective: to determine the meaning given to the concept of burden of chronic non-communicable disease among patients, family caregivers, health care professionals and health service institutions. Methodology: a systematic review conducted using the following databases: LILACS, Sage, Willey Online Library, Scopus, Bireme, Scielo, ScienceDirect, PubMed, Proquest and Cuiden. Results: a total of 538 papers were found, 58 of which were selected for analysis. These papers formed three categories: physical burden, psychosocial burden and additional financial effort. Conclusions: the meaning of the burden of chronic disease is built by patients and their caregivers on the basis of their experience and the effects of the illness on their private life, i.e. the impact at the personal or family levels. Health professionals and institutions acknowledge the importance of the experience of the disease for the patient and family, but they both give priority to its economic impact at an institutional and health system level.


Texto completo:

PDF HTML

Referencias


Organización Mundial de la Salud. Global status report on noncommunicable diseases 2014 [Internet]. WHO Library Cataloguing-in-Publication Data. 2015 [cited 2015 Aug 21]. p. 302. Disponible en: http://apps.who.int/iris/ bitstream/10665/148114/1/9789241564854_eng.pdf?ua=1

Vos T, Barber RM, Bell B, Bertozzi-Villa A, Biryukov S, Bolliger I, et al. Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. Elsevier; 2015;386(9995):743–800.

Lim SS, Vos T, Flaxman AD, Danaei G, Shibuya K, Adair-Rohani H, et al. A comparative risk assessment of burden of disease and injury attributable to 67 risk factors and risk factor clusters in 21 regions, 1990-2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2224–60.

Sassi F. Calculating QALYs, comparing QALY and DALY calculations. Health Policy Plan. 2006;21(5):402–8.

Londoño J. la carga de la enfermedad: un nuevo indicador en el campo de la salud publica. Fac Nac Salud Pública. 2012;13(2):24– 32.

Turner J, Kelly B. Emotional dimensions of chronic disease. West J Med. 2000;172(2):124–8.

European Observatory on Health Systems and Policies. Managing Chronic Conditions: experience in eigth countries [Internet]. World Health Organization. 2008 [cited 2015 Aug 22]. p. 202. Disponible en: http://www.euro.who.int/__data/assets/pdf_ file/0008/98414/E92058.pdf

Real Academia Española. Carga [Internet]. 2015 [cited 2015 Aug 22]. Disponible en: http://lema.rae.es/drae/srv/ search?id=om4i0fFiHDXX2YkE33lJ

Carrillo-González GM, Sánchez-Herrera B, Barrera-Ortiz L, Chaparro-Díaz OL. Carga del cuidado de la enfermedad crónica no transmisible. Aquichan [Internet]. 2013 Aug 21 [cited 2015 Aug 26];13(2). Disponible en: http://aquichan.unisabana.edu.co/ index.php/aquichan/article/view/2395/html

Agüero M. Revisiones sistemáticas y metaanálisis en la práctica clínica: una aproximación al tema. Rev Cuba Anestesiol y Reanim. 2013;12(3):224–51.

Beltrán O. Revisiones sistemáticas de la literatura. Rev Colomb Gastroenterol. 2005;20(1):60–9.

Bobenrieth M. Lectura crítica de artículos originales en salud. Med Fam. 2001;2(1):81–90.

Cleeland CS, Mayer M, Dreyer NA, Yim YM, Yu E, Su Z, et al. Impact of symptom burden on work-related abilities in patients with locally recurrent or metastatic breast cancer: Results from a substudy of the VIRGO observational cohort study. Breast. 2014;23(6):763–9.

LeBlanc TW, Smith JM, Currow DC. Symptom burden of haematological malignancies as death approaches in a community palliative care service: a retrospective cohort study of a consecutive case series. Lancet Haematol. 2015;2(8):334–8.

Lefkowits C, Teuteberg W, Courtney-Brooks M, Sukumvanich P, Ruskin R, Kelley JL. Improvement in symptom burden within one day after palliative care consultation in a cohort of gynecologic oncology inpatients. Gynecol Oncol. 2015;136(3):424–8.

Eckerblad J, Theander K, Ekdahl A, Jaarsma T, Hellstrom I. To adjust and endure: A qualitative study of symptom burden in older people with multimorbidity. Appl Nurs Res. 2015;28(4):322–7.

Ganzer HL, Rothpletz-Puglia P, Byham-Gray L, Murphy BA, Touger-Decker R. Symptom Burden in Long Term Survivors of Head and Neck Cancer. J Acad Nutr Diet. 2015;115(9):A25.

Bapat U, Kedlya PG. Perceived illness intrusions among continuous ambulatory peritoneal dialysis patients. Saudi J Kidney Dis Transpl. 2012;23(5):958–64.

Prakash KM, Nadkarni N V, Lye W-K, Yong M-H, Chew L-M, Tan E-K. A longitudinal study of non-motor symptom burden in Parkinson’s disease after a transition to expert care. Parkinsonism Relat Disord. 2015;21(8):843–7.

Wahl AK, Gjengedal E, Hanestad BR. The bodily suffering of living with severe psoriasis: in-depth interviews with 22 hospitalized patients with psoriasis. Qual Health Res. 2002;12(2):250–61.

Perruccio A V, Katz JN, Losina E. Health burden in chronic disease: multimorbidity is associated with self-rated health more than medical comorbidity alone. J Clin Epidemiol. 2012;65(1):100–6.

Nasrallah HA, Harvey PD, Casey D, Csoboth CT, Hudson JI, Julian L, et al. The Management of Schizophrenia in Clinical Practice (MOSAIC) Registry: A focus on patients, caregivers, illness severity, functional status, disease burden and healthcare utilization. Schizophr Res. 2015;166(1):69–79.

Dowling EC, Chawla N, Forsythe LP, de Moor J, McNeel T, Rozjabek HM, et al. Lost productivity and burden of illness in cancer survivors with and without other chronic conditions. Cancer. 2013;119(18):3393–401.

Caicedo C. Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20(6):398–407.

Liu J, Wang L, Tan J, Ji P, Gauthier S, Zhang Y, et al. Burden, anxiety and depression in caregivers of veterans with dementia in Beijing. Arch Gerontol Geriatr. 2012;55(3):560–3.

Sautter JM, Tulsky JA, Johnson KS, Olsen MK, BurtonChase AM, Lindquist JH, et al. Caregiver experience during advanced chronic illness and last year of life. J Am Geriatr Soc. 2014;62(6):1082–90.

Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052– 60.

Carod-Artal FJ, Ferreira Coral L, Trizotto DS, Menezes Moreira C. Burden and perceived health status among caregivers of stroke patients. Cerebrovasc Dis. 2009;28(5):472–80.

Limpawattana P, Theeranut A, Chindaprasirt J, Sawanyawisuth K, Pimporm J. Caregivers burden of older adults with chronic illnesses in the community: a cross-sectional study. J Community Health. 2013;38(1):40–5.

Jones SL, Hadjistavropoulos HD, Janzen JA, Hadjistavropoulos T. The relation of pain and caregiver burden in informal older adult caregivers. Pain Med. 2011;12(1):51–8.

Kopp RP, Marshall LM, Wang PY, Bauer DC, Barrett-Connor E, Parsons JK. The burden of urinary incontinence and urinary bother among elderly prostate cancer survivors. Eur Urol. 2013;64(4):672–9.

Park EM, Rosenstein DL. Living with advanced cancer: unmet survivorship needs. N C Med J. 2014;75(4):279–82.

Kobayashi S, Yanai M, Hanagama M, Yamanda S. The burden of chronic obstructive pulmonary disease in the elderly population. Respir Investig. 2014;52(5):296–301.

Kurita GP, Sjøgren P, Juel K, Højsted J, Ekholm O. The burden of chronic pain: a cross-sectional survey focussing on diseases, immigration, and opioid use. Pain. 2012;153(12):2332–8.

Brown ML, Lipscomb J, Snyder C. The burden of illness of cancer: economic cost and quality of life. Annu Rev Public Health. 2001;22:91–113.

Torrance N, Lawson KD, Afolabi E, Bennett MI, Serpell MG, Dunn KM, et al. Estimating the burden of disease in chronic pain with and without neuropathic characteristics: does the choice between the EQ-5D and SF-6D matter? Pain. 2014;155(10):1996–2004.

Uzaslan E, Mahboub B, Beji M, Nejjari C, Tageldin MA, Khan JA, et al. The burden of chronic obstructive pulmonary disease in the Middle East and North Africa: results of the BREATHE study. Respir Med. 2012;106(2):45–59.

Möller-Leimkühler AM, Wiesheu A. Caregiver burden in chronic mental illness: the role of patient and caregiver characteristics. Eur Arch Psychiatry Clin Neurosci. 2012;262(2):157–66.

Magliano L, Fiorillo A, Rosa C, Maj M. Family burden and social network in schizophrenia vs. physical diseases: preliminary results from an Italian national study. Acta Psychiatr Scand Suppl. 2006;(429):60–3.

Ohman M, Söderberg S. The experiences of close relatives living with a person with serious chronic illness. Qual Health Res. 2004;14(3):396–410.

Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke. 2009;4(4):285–92.

Chang H-Y, Chiou C-J, Chen N-S. Impact of mental health and caregiver burden on family caregivers’ physical health. Arch Gerontol Geriatr. 2010;50(3):267–71.

Pedrón-Giner C, Calderón C, Martínez-Costa C, Borraz Gracia S, Gómez-López L. Factors predicting distress among parents/ caregivers of children with neurological disease and home enteral nutrition. Child Care Health Dev. 2014;40(3):389–97.

Cox A, Ostring G, Piper S, Munro J, Singh-Grewal D. Maternal stress associated with juvenile idiopathic arthritis. Int J Rheum Dis. 2014;17(5):541–7.

Schneider M, Steele R, Cadell S, Hemsworth D. Differences on Psychosocial Outcomes Between Male and Female Caregivers of Children With Life-Limiting Illnesses. J Pediatr Nurs. 2011;26(3):186–99.

Godoy-Ramírez AM, Pérez-Verdún MÁ, Doménech-del Rio A, Prunera-Pardell MJ. Caregiver burden and social support perceived by patients with chronic obstructive pulmonary disease. Rev Calid Asist. 2014;29(6):320–4.

Bartolo M, De Luca D, Serrao M, Sinforiani E, Zucchella C, Sandrini G. Caregivers burden and needs in community neurorehabilitation. J Rehabil Med. 2010;42(9):818–22.

Burton AM, Sautter JM, Tulsky JA, Lindquist JH, Hays JC, Olsen MK, et al. Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. J Pain Symptom Manage. 2012;44(3):410–20.

Mackey K, Parchman ML, Leykum LK, Lanham HJ, Noël PH, Zeber JE. Impact of the Chronic Care Model on medication adherence when patients perceive cost as a barrier. Prim Care Diabetes. 2012;6(2):137–42.

Piette JD, Heisler M, Wagner TH. Cost-related medication underuse: do patients with chronic illnesses tell their doctors? Arch Intern Med. 2004;164(16):1749–55.

Shahly V, Chatterji S, Gruber MJ, Al-Hamzawi A, Alonso J, Andrade LH, et al. Cross-national differences in the prevalence and correlates of burden among older family caregivers in the World Health Organization World Mental Health (WMH) Surveys. Psychol Med. 2013;43(4):865–79.

Jackson D, McCrone P, Turner-Stokes L. Costs of caring for adults with long-term neurological conditions. J Rehabil Med. 2013;45(7):653–61.

Gosseries O, Demertzi A, Ledoux D, Bruno M-A, Vanhaudenhuyse A, Thibaut A, et al. Burnout in healthcare workers managing chronic patients with disorders of consciousness. Brain Inj. 2012;26(12):1493–9.

Brown LK, Schultz JR, Forsberg AD, King G, Kocik SM, Butler RB. Predictors of retention among HIV/hemophilia health care professionals. Gen Hosp Psychiatry. 2002;24(1):48–54.

Dunwoodie DA, Auret K. Psychological morbidity and burnout in palliative care doctors in Western Australia. Intern Med J. 2007;37(10):693–8.

Westermann C, Kozak A, Harling M, Nienhaus A. Burnout intervention studies for inpatient elderly care nursing staff: systematic literature review. Int J Nurs Stud. 2014;51(1):63–71.

Davis S, Lind BK, Sorensen C. A comparison of burnout among oncology nurses working in adult and pediatric inpatient and outpatient settings. Oncol Nurs Forum. 2013;40(4):E303–11.

Ekwueme DU, Yabroff KR, Guy GP, Banegas MP, de Moor JS, Li C, et al. Medical costs and productivity losses of cancer survivors-United States, 2008-2011. MMWR Morb Mortal Wkly Rep. 2014;63(23):505–10.

Rossi E, Cinconze E, De RM. Burden and Cost of Multiple Chronic Diseases in A Large Cohort of Elderly in Italy. Value Heal. 2014;17(7):507.

Vupputuri S, Kimes TM, Calloway MO, Christian JB, Bruhn D, Martin AA, et al. The economic burden of progressive chronic kidney disease among patients with type 2 diabetes. J Diabetes Complications. 2014;28(1):10–6.

Yabroff KR, Lawrence WF, Clauser S, Davis WW, Brown ML. Burden of Illness in Cancer Survivors: Findings From a Population-Based National Sample. JNCI J Natl Cancer Inst. 2004;96(17):1322–30.

Dowling E, Yabroff KR, Mariotto A, McNeel T, Zeruto C, Buckman D. Burden of illness in adult survivors of childhood cancers: findings from a population-based national sample. Cancer. 2010;116(15):3712–21.

Wittenborn JS, Zhang X, Feagan CW, Crouse WL, Shrestha S, Kemper AR, et al. The economic burden of vision loss and eye disorders among the United States population younger than 40 years. Ophthalmology. 2013;120(9):1728–35.

American Diabetes Association. Economic costs of diabetes in the U.S. In 2007. Diabetes Care. 2008;31(3):596–615.

Bárbara C, Rodrigues F, Dias H, Cardoso J, Almeida J, Matos MJ, et al. Chronic obstructive pulmonary disease prevalence in Lisbon, Portugal: The burden of obstructive lung disease study. Rev Port Pneumol (English Ed. 2013;19(3):96–105.

Francis ER, Kuo C, Bernabe-Ortiz A, Nessel L, Gilman R, Checkley W, et al. Burden of chronic kidney disease in Peru: a population-based study. Lancet Glob Heal. 2015;3:S34.

Ferreira PRA, Brandão-Mello CE, Estes C, Júnior FLG, Coelho HSM, Razavi H, et al. Disease burden of chronic hepatitis C in Brazil. Braz J Infect Dis. 2015;19(4):363–8.

Hoerger TJ, Simpson SA, Yarnoff BO, Pavkov ME, Ríos Burrows N, Saydah SH, et al. The future burden of CKD in the United States: a simulation model for the CDC CKD Initiative. Am J Kidney Dis. 2015;65(3):403–11.

Tarleton HP, Ryan-Ibarra S, Induni M. Chronic disease burden among cancer survivors in the California Behavioral Risk Factor Surveillance System, 2009-2010. J Cancer Surviv. 2014;8(3):448–59.

Kim E-J, Yoon S-J, Jo M-W, Kim H-J. Measuring the burden of chronic diseases in Korea in 2007. Public Health. 2013;127(9):806–13.


Resumen : 4085 PDF : 784 HTML : 262

Métricas de artículo

Cargando métricas ...

Metrics powered by PLOS ALM


Esta publicación hace parte del Sistema de Revistas de la Universidad de Antioquia
¿Quieres aprender a usar el Open Journal system? Ingresa al Curso virtual
Este sistema es administrado por el Programa Integración de Tecnologías a la Docencia
Universidad de Antioquia
Powered by Public Knowledge Project