Abstract
The possibility of prolonging and augmenting the quality of life of respiratory patients in end-stage disease depends on an increased level of care. This situation has increased the number of patients dependent on long-term therapies assisting pulmonary function such as chronic oxygen supply or mechanical ventilation. A specifically designed questionnaire was administered to caregivers to analyse the level of care provided to these patients in seven respiratory disease centres of Northern Italy. The study population consisted of 72 patients (45 males and 27 females) with at least 8 years of oxygen therapy and 1 year of mechanical ventilation (patients with sleep apnoea treated with continuous positive airway pressure-CPAP-were excluded). Of the 72 patients, 17 were being treated with oxygen therapy, 4 with mechanical ventilation and 51 with mechanical ventilation plus oxygen. The questionnaire was divided in two parts: questions 1 to 13 investigated life conditions and 14 to 22 the quality of care provided. The patients studied present a heavy burden of care and this is in relation to the quantity of respiratory aids prescribed. The symptom which created statistically significant problems for care was dyspnoea, as is often reported in the literature. The presence of home care tended to create conditions of greater serenity for the caregivers. This study shows that the burden of care in severe respiratory patients is very onerous, and it can help to point out problems not sufficiently contemplated in healthcare planning in Italy.
Riassunto
Come e’ noto la possibilità di allungare e migliorare la qualità della vita per i malati respiratori allo stadio avanzato di malattia e’ legata a un incremento del livello di assistenza: tale situazione ha aumentato il numero dei pazienti legati alla somministrazione cronica di terapie che supportino la funzione polmonare quali l’ossigenoterapia o la ventilazione meccanica. Attraverso un questionario formulato ad hoc abbiamo voluto analizzare, in 7 centri pneumologici del Nord Italia, la condizione di assistenza di questi malati tramite quanto riferito dai loro caregivers. Sono stati reclutati 72 pazienti (45 maschi–27 femmine) in ossigenoterapia da almeno 8 anni o in ventilazione meccanica associata o meno ad ossigenoterapia (i pazienti con sindromi ostruttive del sonno che praticavano CPAP sono stati esclusi). La tipologia dei malati inseriti era la seguente: 17 pazienti in ossigenoterapia, 4 in sola ventilazione meccanica e 51 in ventilazione meccanica + arricchimento di ossigeno. Il questionario sottoposto era diviso in due raggruppamenti di domande: dalla domanda 1 alla 13 sono state approfondite le condizioni di vita del paziente (comprese quelle del caregiver) e dalla domanda 14 alla 22 la qualità percepita dell’assistenza ricevuta. I pazienti studiati presentano un grave carico assistenziale e cio’ e’ in relazione con la quantita’ di presidi respiratori prescritti. Il sintomo che ha staticamente condizionato una maggiore difficoltà all’assistenza e’ stata la dispnea come spesso viene indicato in letteratura. La presenza di assistenza domiciliare (ADI) ha procurato una maggiore serenità nell’assistenza da parte dei care-ivers. Questo studio mette in evidenza che il carico assistenziale per i malati respiratori severi risulta essere estremamente pesante con risvolti importanti per chi li assiste. Questo studio può contribuire ad evidenziare un problema non ancora sufficientemente considerato a livello di pianificazione sanitaria nella nostra Nazione.
Article PDF
Similar content being viewed by others
References
Vitacca M (2007) Il carico psico-fisico di chi assiste i pazienti sopravvissuti dopo ventilazione meccanica prolungata — commento editoriale. Pneumorama 47:48–49
Vitacca M, Barbano L, Galavoni G et al (2006) Italian multicenter survey on the last 3 months of life in patients ventilated at home. Abstract ERS Congress
Van Pelt DC, Milbrandt EB, Quin L et al (2007) Informal caregiver burden among survivors of prolonged mechanical ventilation. Am J Resp Crit Care Med 175:167–173
Douglas SL, Daly BJ (2005) Caregivers of long-term ventilator patients. Chest 123:1073–1081
Elkington E, White P, Addington-Hall J et al (2005) The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med 19:485–491
Curtis JR, Wenrich MJ, Carline JD et al (2005) Patients’ perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer and AIDS. Chest 122:356–362
Ambrosino N, Goldstein R (2007) Series of comprehensive management of end-age COPD. Eur Resp J 30:828–830
Walke LM, Gallo WT, Tinetti E, Fried TR (2004) The burden of symptoms among community-dwelling older persons with advanced chronic disease. Arch Intern Med 164:2321–2324
Gore JM, Brophy CJ, Greenstone MA (2000) How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 55:1000–1006
Claessens MT, Lynn J, Zhong Z (2000) Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT, Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc 48:S146–S153
Seamark DA, Blake SD, Seamark CJ, Halpin MG (2004) Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their care. Palliat Med 18:619–625
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Nicolini, A., Campodonico, C., Guerra, A. et al. Care of the patient with end-stage chronic respiratory failure: the perspective of the caregiver. J Med Pers 7, 35–41 (2009). https://doi.org/10.1007/s12682-009-0006-1
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12682-009-0006-1