An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: The research protocol of the Home Sweet Home study

BMJ Open

Volumn 4, Issue 11, 2014, Pages

  Nakken, Nienke ^a   Janssen, Daisy J A ^a,b   Van Den Bogaart, Esther H A ^a   Vercoulen, Jan H ^c   Wouters, Emiel F M ^a,b   Spruit, Martijn A ^a  

^a CIRO+   (Netherlands)

^b MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^c RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ANXIETY; ARTICLE; CHRONIC OBSTRUCTIVE LUNG DISEASE; CLINICAL ASSESSMENT; DISEASE EXACERBATION; DYSPNEA; FAT FREE MASS; FEMALE; FOLLOW UP; HEALTH STATUS; HOME ENVIRONMENT; HOSPITAL ADMISSION; HUMAN; LIFESTYLE; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MALE; METHODOLOGY; OBSERVATIONAL STUDY; OUTCOME ASSESSMENT; PERCEPTION; PHYSICAL ACTIVITY; PROFESSIONAL PRACTICE; PROSPECTIVE STUDY; RESIDENT; SMOKING HABIT; SOCIAL SUPPORT; WELLBEING; ATTITUDE TO HEALTH; DAILY LIFE ACTIVITY; FAMILY; PULMONARY DISEASE, CHRONIC OBSTRUCTIVE;

ACTIVITIES OF DAILY LIVING; ATTITUDE TO HEALTH; FAMILY; FEMALE; HEALTH STATUS; HUMANS; MALE; PROSPECTIVE STUDIES; PULMONARY DISEASE, CHRONIC OBSTRUCTIVE; RESEARCH DESIGN;

EID: 84912043569     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2014-006098     Document Type: Article

References (54)

1. World Health Organization. The 10 leading causes of death in the world, 2000 and 2011. Secondary World Health Organization. The 10 leading causes of death in the world, 2000 and 2011 July 2013 2013. http://www.who.int/mediacentre/factsheets/fs310/en/index.html
2. Vestbo J, Hurd SS, Agusti AG, et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease: GOLD executive summary. Am J Respir Crit Care Med 2013;187:347-65.
3. Heinen MM, van Achterberg T, Schwendimann R, et al. Nurses' intention to leave their profession: a cross sectional observational study in 10 European countries. Int J Nurs Stud 2013;50:174-84.
4. Janssen DJ, Spruit MA, Uszko-Lencer NH, et al. Symptoms, comorbidities, and health care in advanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med 2011;14:735-43.
5. Vaes AW, Wouters EF, Franssen FM, et al. Task-related oxygen uptake during domestic activities of daily life in patients with COPD and healthy elderly subjects. Chest 2011;140:970-9.
6. Annegarn J, Meijer K, Passos VL, et al. Problematic activities of daily life are weakly associated with clinical characteristics in COPD. J Am Med Dir Assoc 2012;13:284-90.
7. Spence A, Hasson F, Waldron M, et al. Active carers: living with chronic obstructive pulmonary disease. Int J Palliat Nurs 2008;14:368-72.
8. Houts PS, Nezu AM, Nezu CM, et al. The prepared family caregiver: a problem-solving approach to family caregiver education. Patient Educ Couns 1996;27:63-73.
9. Candy B, Jones L, Drake R, et al. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev 2011;(6):CD007617.
10. Bergs D. "The Hidden Client"-women caring for husbands with COPD: their experience of quality of life. J Clin Nurs 2002;11:613-21.
11. Seamark DA, Blake SD, Seamark CJ, et al. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med 2004;18:619-25.
12. Hynes G, Stokes A, McCarron M. Informal care-giving in advanced chronic obstructive pulmonary disease: lay knowledge and experience. J Clin Nurs 2012;21:1068-77.
13. Garlo K, O'Leary JR, Van Ness PH, et al. Burden in caregivers of older adults with advanced illness. J Am Geriatr Soc 2010;58:2315-22.
14. Janssen DJ, Spruit MA, Wouters EF, et al. Family caregiving in advanced chronic organ failure. J Am Med Dir Assoc 2012;13:394-9.
15. Low G, Gutman G. Couples' ratings of chronic obstructive pulmonary disease patients' quality of life. Clin Nurs Res 2003;12:28-48.
16. Janssen DJ, Spruit MA, Wouters EF, et al. Symptom distress in advanced chronic organ failure: disagreement among patients and family caregivers. J Palliat Med 2012;15:447-56.
17. Jacome C, Figueiredo D, Gabriel R, et al. Predicting anxiety and depression among family carers of people with chronic obstructive pulmonary disease. Int Psychogeriatr 2014;26:1191-9.
18. Kuhl K, Schurmann W, Rief W. Mental disorders and quality of life in COPD patients and their spouses. Int J Chron Obstruct Pulmon Dis 2008;3:727-36.
19. Fitzsimons D, Mullan D, Wilson JS, et al. The challenge of patients' unmet palliative care needs in the final stages of chronic illness. Palliat Med 2007;21:313-22.
20. Figueiredo D, Gabriel R, Jacome C, et al. Caring for relatives with chronic obstructive pulmonary disease: how does the disease severity impact on family carers? Aging Ment Health 2014;18:385-93.
21. Hwang B, Fleischmann KE, Howie-Esquivel J, et al. Caregiving for patients with heart failure: impact on patients' families. Am J Crit Care 2011;20:431-41; quiz 42.
22. Vestbo J, Hurd SS, Agusti AG, et al. Global Strategy for the Diagnosis, Management and Prevention of Chronic Obstructive Pulmonary Disease, GOLD Executive Summary. Am J Respir Crit Care Med 2013;187:347-65.
23. Rodriguez-Roisin R. Toward a consensus definition for COPD exacerbations. Chest 2000;117(5 Suppl 2):398S-401S.
24. Carpenter CR, Bassett ER, Fischer GM, et al. Four sensitive screening tools to detect cognitive dysfunction in geriatric emergency department patients: brief Alzheimer's Screen, Short Blessed Test, Ottawa 3DY, and the caregiver-completed AD8. Acad Emerg Med 2011;18:374-84.
25. Morris JC, Heyman A, Mohs RC, et al. The Consortium to Establish a Registry for Alzheimer's Disease (CERAD). Part I. Clinical and neuropsychological assessment of Alzheimer's disease. Neurology 1989;39:1159-65.
26. Hurst JR, Vestbo J, Anzueto A, et al. Susceptibility to exacerbation in chronic obstructive pulmonary disease. N Engl J Med 2010;363:1128-38.
27. Global Strategy for the Diagnosis MaPoC. Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2014. Secondary Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2014 2014. http://www.goldcopd.org/
28. Dedding C, Cardol M, Eyssen IC, et al. Validity of the Canadian Occupational Performance Measure: a client-centred outcome measurement. Clin Rehabil 2004;18:660-7.
29. Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist 1969;9:179-86.
30. Jones PW, Harding G, Berry P, et al. Development and first validation of the COPD Assessment Test. Eur Respir J 2009;34:648-54.
31. Resnick B, Nahm ES. Reliability and validity testing of the revised 12-item Short-Form Health Survey in older adults. J Nurs Meas 2001;9:151-61.
32. Pickard AS, Wilke C, Jung E, et al. Use of a preference-based measure of health (EQ-5D) in COPD and asthma. Respir Med 2008;102:519-36.
33. Bestall JC, Paul EA, Garrod R, et al. Usefulness of the Medical Research Council (MRC) dyspnoea scale as a measure of disability in patients with chronic obstructive pulmonary disease. Thorax 1999;54:581-6.
34. Vercoulen JH, Swanink CM, Fennis JF, et al. Dimensional assessment of chronic fatigue syndrome. J Psychosom Res 1994;38:383-92.
35. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361-70.
36. Richardson J, Lezzi A. Psychometric validity and the AQoL-8D multi attribute utility instrument. Centre for Health Economics. Melbourne, Australia: Monash University, Business and Economics, 2011.
37. Podsiadlo D, Richardson S. The timed "Up & Go": a test of basic functional mobility for frail elderly persons. J Am Geriatr Soc 1991;39:142-8.
38. Scharloo M, Kaptein AA, Weinman J, et al. Illness perceptions, coping and functioning in patients with rheumatoid arthritis, chronic obstructive pulmonary disease and psoriasis. J Psychosom Res 1998;44:573-85.
39. Dijkstra A, Tiesinga LJ, Goossen WT, et al. Further psychometric testing of the Dutch Care Dependency Scale on two different patient groups. Int J Nurs Pract 2002;8:305-14.
40. Annegarn J, Spruit MA, Uszko-Lencer NH, et al. Objective physical activity assessment in patients with chronic organ failure: a validation study of a new single-unit activity monitor. Arch Phys Med Rehabil 2011;92:1852-57. e1.
41. Markland D, Tobin V. A modification to the behavioural regulation in exercise questionnaire to include an assessment of amotivation. J Sport Exerc Psychol 2004;26:6.
42. Heatherton TF, Kozlowski LT, Frecker RC, et al. The Fagerstrom Test for Nicotine Dependence: a revision of the Fagerstrom Tolerance Questionnaire. Br J Addict 1991;86:1119-27.
43. Sherbourne CD, Stewart AL. The MOS social support survey. Soc Sci Med 1991;32:705-14.
44. Barelds DPH, Luteijn F, Arrindell WA. Nederlandse Relatievragenlijst (NRV). In: PAaI BV, ed. Amsterdam: Handleiding, 2003.
45. Cooper B, Kinsella GJ, Picton C. Development and initial validation of a family appraisal of caregiving questionnaire for palliative care. Psychooncology 2006;15:613-22.
46. Rutten EP, Spruit MA, Wouters EF. Critical view on diagnosing muscle wasting by single-frequency bio-electrical impedance in COPD. Respir Med 2010;104:91-8.
47. Charlson ME, Pompei P, Ales KL, et al. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 1987;40:373-83.
48. Miravitlles M, Mayordomo C, Artes M, et al. Treatment of chronic obstructive pulmonary disease and its exacerbations in general practice. EOLO Group. Estudio Observacional de la Limitacion Obstructiva al Flujo aEreo. Respir Med 1999;93:173-9.
49. Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986;1:307-10.
50. World Medical Association Declaration of Helsinki. Recommendations guiding physicians in biomedical research involving human subjects. JAMA 1997;277:925-6.
51. Wet van 26 februari 1998, houdende regelen inzake medisch-wetenschappelijk onderzoek met mensen (Wet medisch-wetenschappelijk onderzoek met mensen). 28-02-1998. http://wetten.overheid.nl
52. Barriga S, Rodrigues F, Barbara C. Factors that influence physical activity in the daily life of male patients with chronic obstructive pulmonary disease. Rev Port Pneumol 2014;20:131-7.
53. Figueiredo D, Gabriel R, Jacome C, et al. Caring for people with early and advanced chronic obstructive pulmonary disease: how do family carers cope? J Clin Nurs 2014;23:211-20.
54. Kuprys-Lipinska I, Kuna P. Impact of chronic obstructive pulmonary disease (COPD) on patient's life and his family. Pneumonol Alergol Pol 2014;82:82-95.