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MALADIE CHRONIQUE

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Early-integrated palliative home care and standard care for end-stage COPD (EPIC) - a phase II pilot RCT testing feasibility, acceptability and effectiveness

SCHEERENS, Charlotte ; PYPE, Peter ; VAN CAUWENBERG, Jelle ; VANBUTSELE, Gaëlle ; EECLOO, Kim ; DEROM, Eric ; VAN BELLE, Simon ; JOOS, Guy ; DELIENS, Luc ; CHAMBAERE, Kenneth
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 09/10/2019, Pagination inconnue

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Thème : Médecine.

HOSPITALISATION DOMICILE SOINS PALLIATIFS ; MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; EFFICACITE ; EVALUATION

BACKGROUND: While early-integrated palliative home care (PHC) is believed to be beneficial for COPD patients, trials testing this hypothesis are rare and show inconclusive results.
AIM: To test feasibility, acceptability and preliminary effectiveness of early-integrated PHC for end-stage COPD.
METHOD: Testing a six-month early-integrated PHC pilot RCT given by PHC nurses for end-stage COPD with five components: (1) pre-inclusion COPD support training for PHC nurses; (2) monthly PHC visits; (3) leaflets on coping mechanisms; (4) a protocol on symptom management and support, a care and action plan; (5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six-weekly. Participants and healthcare professionals involved were interviewed.
RESULTS: Of 70 eligible patients, 39 (56%) participated (20:19 intervention-control) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); 8/10 interviewed patients referred to the psychosocial support, breathing exercises and care decisions as helpful. Some GPs criticised PHC being given too early but pulmonologists and PHC nurses did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24 fewer hospitalisations in the control group (p=0.03) and a trend of higher perceived quality of care in the intervention group (p=0.06) was found. A clinically relevant difference was observed at week 24 for health-related quality of life in favour of the control group.
CONCLUSION: Our intervention on early-integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III-trial, enhanced coordination of care, more GP involvement, more intensive training for PHC nurses in COPD support and revision of the trial design, e.g. of targeted outcomes in line with individual patient goals and care preferences should be improved.

Origine : PubMed

Pediatric complex chronic conditions - does the classification system work for infants?

LINDLEY, Lisa C. ; FORTNEY, Christine A.
American journal of hospice and palliative medicine, 10/2019, vol.36, n°10, p. 858-863

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Treatment decisions in end-stage COPD: who decides how? - a cross-sectional survey of different medical specialties

GABLER, Martin ; OHRENBERGER, Gerald ; FUNK, Georg-Christian
ERJ open research, 07/2019, vol.5, n°3, p. 1-10

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End-of-life care in individuals with respiratory diseases - a population study comparing the dying experience between those with chronic obstructive pulmonary disease and lung cancer

KENDZERSKA, Tetyana ; NICKERSON, Jason W. ; HSU, Amy T. ; GERSHON, Andrea S. ; TALARICO, Robert ; MULPURU, Sunita ; PAKHALE, Smita ; TANUSEPUTRO, Peter
International journal of chronic obstructive pulmonary disease, 2019, vol.14, p. 1691-1701

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Les maladies inflamatoires chroniques intestinales

BALEZ, Eric
ASP LIAISONS, 06/2019, n°58, p. 25-27

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Early do-not-resuscitate directives decrease invasive procedures and health care expenses during the final hospitalization of life of copd patients

FU, Pin-Kuei ; YANG, Ming-Chin ; WANG, Chen-Yu ; LIN, Shin-Pin ; KUO, Chen-Tsung ; HSU, Chiann-Yi ; TUNG, Yu-Chi
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 09/08/2019, Pagination inconnue

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Integrating palliative home care early into standard care of end-stage COPD

SCHEERENS, Charlotte
ASP nv , 2019 , 297 p.

Longer duration of palliative care in patients with COPD is associated with death outside the hospital

KRASKOVSKY, Valeri ; SCHNEIDER, Jaclyn ; MADOR, M. Jeffery ; PROVOST, Karin A.
JOURNAL OF PALLIATIVE CARE, 02/07/2019, Pagination inconnue

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Nurse-led integration of palliative care for chronic obstructive pulmonary disease - an integrative literature review

ORA, Linda ; MANNIX, Judy ; MORGAN, Lucy ; WILKES, Lesley
Journal of clinical nursing, 20/07/2019, Pagination inconnue

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Integrating palliative care into the chronic illness continuum - a conceptual model for minority populations

GAZAWAY, Shena ; STEWART, Merry ; SCHUMACHER, Autumn
Journal of racial and ethnic health disparities, 27/06/2019, p. 1-9

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Perception of palliative medicine by health care professionals at a teaching community hospital - what is the key to a "palliative attitude"?

CHEUNG, Nga Yu ; GORELIK, Anna ; MEHTA, Parag ; MUDANNAYAKE, Louis ; RAMESH, Arundati ; BHARATHAN, Thayyllathil ; GOLDENBERG, Gregory
Journal of multidisciplinary healthcare, 2019, vol.12, p. 437-443

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The chronic sick role - its time has come

SCHIPKE, Timothy
OMEGA JOURNAL OF DEATH AND DYING, 18/06/2019, Pagination inconnue

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Study protocol to investigate the efficacy of normalisation of advance care planning (ACP) for people with chronic diseases in acute and community settings - a quasi-experimental design

JEONG, Sarah ; BARRETT, Tomiko ; OHR, Se Ok ; CLEASBY, Peter ; DAVID, Michael ; CHAN, Sally ; FAIRLAMB, Helen ; DAVEY, Ryan ; SAUL, Peter
BMC health services research, 04/05/2019, vol.19, n°1, 10 p.

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Improving the waiting times within a hospice breathlessness service

SIME, Caroline ; MILLIGAN, Stuart ; DONAL ROONEY, Kevin
BMJ open quality, 2019, vol.8, n°2, 7 p.

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Impacts of person-centred integrated chronic heart failure and palliative home care on pharmacological heart failure treatment - a substudy of a randomised trial

MARKGREN, Rickard ; BRANNSTROM, Margareta ; LUNDGREN, Claes ; BOMAN, Kurt
BMJ supportive and palliative care, 03/2019, vol.9, n°1, p. e10

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Costs and outcomes of advance care planning and end-of-life care for older adults with end-stage kidney disease - a person-centred decision analysis

SELLARS, Marcus ; CLAYTON, Josephine M. ; DETERING, Karen M. ; TONG, Allison ; POWER, David ; MORTON, Rachael L.
Plos one, 2019, vol.14, n°5, p. 1-11

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Advance care planning with chronically ill patients - a relational autonomy approach

KILLACKEY, Tieghan ; PETER, Elizabeth ; MACIVER, Jane ; MOHAMMED, Shan
Nursing ethics, 23/05/2019, Pagination inconnue

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Thème : Soins.

PLANIFICATION ; ANTICIPATION ; SOIN ; AUTONOMIE ; MALADIE CHRONIQUE

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.

Origine : PubMed

Efficacy of motivational interviewing to enhance advance directive completion in Latinos with chronic illness - a randomized controlled trial

NEDJAT-HAIEM, Frances R. ; CADET, Tamara J. ; AMATYA, Anup ; THOMPSON, Beti ; MISHRA, Shiraz I.
The American journal of hospice and palliative care, 11/2019, vol.36, n°11, p. 980-992

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End of life care for long-term care residents with dementia, chronic illness and cancer - prospective staff survey

BOYD, Michal ; FREY, Rosemary ; BALMER, Deborah ; ROBINSON, Jackie ; MCLEOD, Heather ; FOSTER, Susan ; SLARK, Julia ; GOTT, Merryn
BMC GERIATRICS, 22/05/2019, vol.19, n°1, p. 1-9

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A formative evaluation of patient and family caregiver perspectives on early palliative care in COPD across disease severity

IYER, Anand S. ; DIONNE-ODOM, J. Nicholas ; FORD, Stephanie M. ; CRUMP TIMS, Sheri L. ; SOCKWELL, Elizabeth D. ; IVANKOVA, Nataliya V. ; BROWN, Cynthia J. ; TUCKER, Rodney O. ; DRANSFIELD, Mark T. ; BAKITAS, Marie A.
Annals of the American Thoracic Society, 30/04/2019, Pagination inconnue

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