HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD): Mixed-method feasibility pilot randomised controlled trial of a novel intervention

npj Primary Care Respiratory Medicine

Volumn 25, Issue , 2015, Pages

  Buckingham, Susan ^a   Kendall, Marilyn ^a   Ferguson, Susie ^b   Macnee, William ^b   Sheikh, Aziz ^a   White, Patrick ^c   Worth, Allison ^a   Boyd, Kirsty ^a   Murray, Scott A ^a   Pinnock, Hilary ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

^b UNIVERSITY OF EDINBURGH   (United Kingdom)

^c University London College   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CHRONIC DISEASE; CHRONIC OBSTRUCTIVE LUNG DISEASE; CLINICAL ARTICLE; CONTROLLED STUDY; COPING BEHAVIOR; DISEASE SEVERITY; DYSPNEA; FEMALE; FUNCTIONAL ASSESSMENT; HOLISTIC CARE; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; LUNG CANCER; MALE; MIDDLE AGED; OUTCOME ASSESSMENT; PALLIATIVE THERAPY; PILOT STUDY; PROGRAM FEASIBILITY; QUESTIONNAIRE; RANDOMIZED CONTROLLED TRIAL; SAINT GEORGE RESPIRATORY QUESTIONNAIRE; SELF HELP; SEMI STRUCTURED INTERVIEW; ADAPTIVE BEHAVIOR; FEASIBILITY STUDY; NURSING ASSESSMENT; PHILOSOPHY; PSYCHOLOGY; PULMONARY DISEASE, CHRONIC OBSTRUCTIVE;

ADAPTATION, PSYCHOLOGICAL; FEASIBILITY STUDIES; HOLISTIC HEALTH; HUMANS; NURSING ASSESSMENT; PILOT PROJECTS; PULMONARY DISEASE, CHRONIC OBSTRUCTIVE;

EID: 84937060720     PISSN: None     EISSN: 20551010     Source Type: Journal    
DOI: 10.1038/npjpcrm.2015.20     Document Type: Article

References (34)

1. House of Commons Health Committee. Palliative Care. The Stationery Office: London, UK, 2004.
2. World Health Organization Europe. The Solid Facts: Palliative Care. World Health Organization: Copenhagen, Denmark, 2004.
3. Gore JM, Brophy CJ, Greenstone MA. 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 2000; 55: 1000-1006.
4. Habraken JM, Willems DL, de Kort SJ, Bindels PJE. Health care needs in end-stage COPD: a structured literature review. Patient Educ Couns 2007; 68: 121-130.
5. Giacomini M, DeJean D, Simeonov D, Smith A. Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser 2012; 12: 1-47.
6. Epiphaniou E, Shipman C, Harding R, Mason B, Murray SA, Higginson IJ et al. Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study. Prim Care Respir J 2014; 23: 46-51.
7. Centers for Medicare & Medicaid Services. Publication No. 02154: A Special Way of Caring for People Who Are Terminally Ill. Department of Health and Human Services: Baltimore, MD, USA, 2008.
8. The Gold Standards Framework. Available from http://www.goldstandardsframe work.org.uk (accessed October 2014).
9. Kendall M, Buckingham S, Ferguson S, Hewitt N, Pinnock H. We need to stop looking for something that is not there. NPJ Prim Care Respir Med 2014; 24: 14031.
10. Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-Threatening disease: a systematic review. Age Ageing 2005; 34: 218-227.
11. Christakis NA, Escarce JJ. Survival of Medicare patients after enrollment in hospice programs. N Engl J Med 1996; 335: 172-178.
12. Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ 2011; 342: d142.
13. Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. We need to move from prognostic paralysis to active total care. BMJ 2005; 330: 611-612.
14. Habraken JM, Pols J, Bindels PJE, Willems DL. The silence of patients with endstage COPD: a qualitative study. Br J Gen Pract 2008; 58: 844-849.
15. Cawley D, Billings J, Oliver D, Kendall M, Pinnock H. Potential triggers for the holistic assessment of people with severe chronic obstructive pulmonary disease: analysis of multi-perspective, serial qualitative interviews. BMJ Support Palliat Care 2014; 4: 152-160.
16. Craig P, Dieppe P, Macinture S, Michie S, Nazareth I, Petticrew M. Developing and Evaluating Complex Interventions: New Guidance. Medical Research Council: London, UK, 2008.
17. Nurmatov U, Buckingham S, Kendall M, Murray SA, White P, Sheikh A et al. Effectiveness of holistic interventions for people with severe chronic obstructive pulmonary disease: systematic review of controlled clinical trials. PLoS One 2012; 7: e46433.
18. Webster K, Cella D, Yost K. The Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System: properties, applications, and interpretation. Health Qual Life Outcomes 2003; 1: 79.
19. Cella DF, Bonomi AE, Lloyd SR, Tulsky DS, Kaplan E, Bonomi P. Reliability and validity of the Functional Assessment of Cancer Therapy-Lung (FACT-L) quality of life instrument. Lung Cancer 1995; 12: 199-220.
20. Jones PW, Quirk FH, Baveystock CM, Littlejohns P. A self-complete measure for chronic airflow limitation-The St George's Respiratory Questionnaire. Am Rev Respir Dis 1992; 145: 1321-1327.
21. Fletcher CM, Elmes PC, Fairbairn AS, Wood CH. The significance of respiratory symptoms and the diagnosis of chronic bronchitis in a working population. BMJ 1959; 2: 257-266.
22. Jones P, Harding G, Berry P, Wiklund I, Leidy NK. Improving the process and outcome of care in COPD: development of a standardised assessment tool. Prim Care Respir J 2009; 18: 208-215.
23. Jones P, Harding G, Wiklund I, Berry P, Chen W-H, Leidy N. Development and first validation of the COPD Assessment Test. Eur Respir J 2009; 34: 648-654.
24. Zigmund AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67: 361-370.
25. Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D. Measuring spiritual wellbeing in people with cancer: The functional assessment of chronic illness therapy -spiritual well-being scale (FACIT-Sp). Ann Behav Med 2002; 24: 49-58.
26. National Institute for Health and Clinical Excellence. National clinical guideline on management of chronic obstructive pulmonary disease in adults in primary and secondary care. Thorax 2004; 59: S1-S232.
27. May C. A rational model for assessing and evaluating complex interventions in health care. BMC Health Serv Res 2006; 6: 86.
28. May C, Murray E, Finch T, Mair F, Treweek S, Ballini L et al. Normalization Process Theory On-line Users Manual and Toolkit. 2010. Available from http://www. normalizationprocess.org (Accessed October 2014).
29. University of Edinburgh. NHS Lothian Supportive and Palliative Care Indicators Tool (SPICT ). Available from http://www.spict.org.uk (Accessed October 2014).
30. Malterud K. Qualitative research: standards, challenges and guidelines. Lancet 2001; 358: 483-488.
31. Dying Matters. Find Your 1%: supporting GPs in delivering quality end of life care. Available from http://www.dyingmatters.org/gp.
32. Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 1999; 48: 1507-1515.
33. Mason B, Nanton V, Epiphaniou E, Murray SA, Donaldson A, Shipman C et al. My body's falling apart. Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carer. BMJ Support Palliat Care 2014; e-pub ahead of print, http://spcare.bmj.com/content/early/2014/05/28/bmjspcare-2013-000639.abstract, doi: 10.1136/bmjspcare-2013-000639.
34. Johnson M, Fallon M. Just good care? The palliative care of those with nonmalignant disease. Palliat Med 2013; 27: 803-804.