Journal List > Korean J Adult Nurs > v.28(5) > 1076425

Hwang, Lee, and Song: Survey on Self Care, Respiratory Difficulty, Sleep Impediment, Anxiety and Depression among Patients with Neuromuscular Disease dependent on Home Mechanical Ventilator

Abstract

Purpose

This study aimed to investigate the influencing factors on self care, respiratory difficulty, sleep impediment, anxiety and depression among patients with neuromuscular disease who are dependent on Home Mechanical Ventilator (HMV).

Methods

157 patients were recruited through hospital based home nursing care departments and HMV rental centers. Data were collected by questionnaires. The analytic methods were n (%) / M±SD, x2 / t-test or ANOVA and multiple linear regression.

Results

Patients with Amyotrophic lateral sclerosis were more likely to utilize HMV, had shorter periods of morbidity and the most extended daily use of HMV. As for medical equipment, they had ambu-bag (87.2%) and oxygenator (15.4%). Reports of respiratory difficulty and sleep impediment were low. There were no significant difference. In contrast, reported anxiety and depression were high and showed significant difference between non invasive HMV and invasive HMV. Anxiety contributes to respiratory difficulty (t=3.62, p=.002), sleep impediment (t=2.06, p=.042), and depression (t=7.24, p<.001). However, home nursing care exerts a positive influence in reducing anxiety (t=-2.73, p=.008).

Conclusion

Anxiety contributes to respiratory difficulty, sleep impediment, and depression. However, those who use home nursing care reported less anxiety. Home nursing care positively impacts patients dependent on HMV as a practical service and available resource.

REFERENCES

1.Simonds AK. Recent advances in respiratory care for neuromuscular disease. Chest. 2006. 130(6):1879–86.
crossref
2.Korean Center for Disease Control. Help line for medical fee [Internet]. Chungju: CDC;2014. [cited 2015, October 16]. Available from:. http://www.cdc.go.kr/CDC/main.jsp.
3.Shin HI. Survey of ventilator support in patients with rare and incurable disease. Service for scientific research report of KCDC. Seoul: Seoul National University Hospital;2009 May. Report No.:2008-E00343-00.
4.King AC. Long-term home mechanical ventilation in the United States. Respiratory Care. 2012. 57(6):921–32. http://dx.doi.org/10.4187/respcare.01741.
crossref
5.Hwang MS., Chang SJ. Self-care education experience, self-care performance, and home care service needs of patients with rare and incurable diseases who use a home ventilator. Journal of Korean Academic Society of Home Health Care Nursing. 2013. 20(1):5–15.
6.Kim JY., Min YS., Kim MS., Kim JS., Kim HL., Shin HI. A survey of respiratory care in amyotrophic lateral sclerosis patients using non-invasive ventilatory support. Journal of Korean Academy of Rehabilitation Medicine. 2010. 34(1):49–53.
7.Heo HS. Choi SM. Quality of life in patients with amyotrophic lateral sclerosis. The Korean Journal of Rehabilitation Nursing. 2013. 6(2):122–32.
8.Janssens JP., Borel JC., Pepin J. Nocturnal monitoring of home non-invasive ventilation: the contribution of simple tools such as pulse oximetry, capnography, built-in ventilator software and autonomic markers of sleep fragmentation. Thorax. 2011. 66(5):438–45. http://dx.doi.org/10.1136/thx.2010.139782.
crossref
9.Bremer BA., Simone AL., Walsh S., Simmons Z., Felgoise SH. Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: the role of positive self-perception and religiosity. Annals Behavior of Medicine. 2004. 28(2):119–25.
crossref
10.Karino M., Sato K., Ando T., Ishiguro H., Yoshikawa S., Tsutaza-wa T, et al. For the seamless care of home ALS patient on a mechanical ventilator the importance of reducing the sputum. Gan To Kagaku Ryoho. 2010. 37(Suppl2):213–4.
11.Imaiso J., Yamauchi T. Caregiver suctioning education for Japanese patients with an invasive home ventilator. Nursing and Health Sciences. 2009. 11(4):422–9.
crossref
12.Tramonti F., Bongioanni P., Di Bernardo C., Davitti S., Rossi B. Quality of life of patients with amyotrophic lateral sclerosis. Psychology, Health & Medicine. 2012. 17(5):621–8. http://dx.doi.org/10.1080/13548506.2011.651149.
crossref
13.Boroughs DS., Dougherty J. Multidisciplinary approach to the care of the ventilator -dependent child at home: a case study. Home Health Nurse. 2010. 28(1):24–8. http://dx.doi.org/10.1097/01.NHH.0000366793.94399.9b.
14.Zoccolella S., Beghi E., Palagano G., Fraddosio A., Guerra V., Lepore V, et al. ALS multidisciplinary clinic and survival: results from a population-based study in southern Italy. Jounal of Neurology. 2007. 254(8):1107–12.
15.Eng D. Management guidelines for motor neuron disease patients on non-invasive ventilation at home. Palliative Medicine. 2006. 20(2):69–79.
16.Ng L., Khan F., Mathers S. Multidisciplinary care for adults with amytrophic lateral sclerosis or motor neuron disease. The Cochrane Data Base of Systematic Reviews. 2011. 4:1–32.
17.Heffernan C., Jenkinson C., Holmes T., Macleod H., Kinnear W., Oliver D, et al. Management of respiration in MND/ALS patients: an evidence based review. Amyotrophic Lateral Sclerosis. 2006. 7:5–15. http://dx.doi.org/10.1080/14660820510043235.
crossref
18.Kim DH., Kang SW., Choi W., Moon JH., Baek JH., Choi SH, et al. A research on the management of ventilatory insufficiency in patients with neuromuscular diseases. Korean Academy of Rehabilitation Medicine. 2010. 34(3):347–54.
19.Kim MH., Kim HS., Park JD. Factors influencing readmission of home ventilator-assisted children. Journal of Korean Academy of Child Health Nursing. 2012. 18(1):9–18. http://dx.doi.org/10.4094/jkachn.2012.18.1.9.
crossref
20.Strickland SL., Rubin BK., Drescher GS., Haas CF., O'Malley CA., Volsko TA, et al. AARC Clinical practice guideline: effectiveness of nonpharmacologic airway clearance therapies in hospitalized patients. Respiratory Care. 2013. 58(12):2187–93. http://dx.doi.org/10.4187/respcare.02925.
crossref
21.Kim HY., Park KH., Koh SH., Lee SC., Nam JH., Kim JH, et al. Korean version of Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised: a pilot study on the reliability and validity. Journal of the Korean Neurological Association. 2007. 25(2):149–54.
22.Reishtein JL. Relationship between symptoms and functional performance in COPD. Research in Nursing & Health. 2005. 28(1):39–47.
crossref
23.Baker TL. Sleep apnea disorder introduction to sleep and sleep disorder. The Medical Clinics of North America. 1985. 69(6):1123–52.
24.Spielberger CD. Anxiety as an emotional state. Spiel-berger C.D., editorAnxiety current trends in theory and research. New York: Academic Press;1972.
crossref
25.Beck AT., Ward CH., Mendelson M., Mock J., Erbaugh J. An inventory for measuring depression. Archives of General Psychiatry. 1961. 4:561–71.
crossref
26.Zigmond AS., Snaith PR. The Hospital Anxiety and Depression Scale. Acta Psychiatric Scandinavia. 1983. 67(6):361–70.
crossref
27.Oh SM., Min KJ., Park DB. A comparison of normal, depressed and anxious groups: a study on the standardization of The Hospital Anxiety and Depression Scale for Koreans. Journal of the Korean Neuropsychiatric Association. 1999. 38(2):289–96.
28.Choi JS., Yeon JH. Ventilator-associated pneumonia with circuit changes every 7 days versus every 14 days. Journal of Korean Academy of Nursing. 2010. 40(6):799–807. http://dx.doi.org/10.4040/jkan.2010.40.6.799.
crossref
29.Kim HJ., Yi MS. Anxiety, depression and uncertainty in cancer patients participating in clinical trial of anticancer drugs. Korean Journal of Adults Nursing. 2013. 25(1):53–61. http://dx.doi.org/10.7475/kjan.2013.25.1.53.
crossref
30.Bae KR., Kim S. The relationships among social support, hope, anxiety, and depression in patients expecting to receive hematopoietic stem cell transplantation. Korean Journal of Adults Nursing. 2013. 28(1):30–42. http://dx.doi.org/10.7475/kjan.2016.28.1.30.
crossref

Table 1.
Comparisons of General Characteristics by Applied Method of HMV (N=157)
Variables Categories Total (N=157) Non IHMV (n=55) IHMV (n=102) x2 or t p
n (%) or M±SD n (%) or M±SD n (%) or M±SD
Gender Male 101 (64.3) 42 (76.4) 59 (57.8) 5.34 .021
Female 56 (35.7) 13 (23.6) 43 (42.2)
Age (year) <45 68 (43.6) 41 (75.9) 27 (26.5)   <.001
45~<65 61 (39.1) 10 (18.5) 51 (50.0)
≥65 27 (17.3) 3 (5.6) 24 (23.5)
  43.46±21.71 30.87±17.46 51.12±20.82 -5.80 <.001
Religion No 50 (31.8) 18 (32.7) 32 (31.4) 0.03 .862
Yes 107 (68.2) 37 (67.3) 70 (68.6)
Family member Couple 24 (15.4) 5 (9.1) 19 (18.8) 3.10 .212
Couple & offspring 97 (62.2) 35 (63.6) 62 (61.4)
Parent & others 35 (22.4) 15 (28.3) 20 (19.8)
Number of caring person 1.75±0.80 1.63±0.77 1.81±0.82 -1.25 .215

Missing data be excluded; IHMV=invasive home mechanical ventilator;

Fisher's exact test.

Table 2.
Comparisons of Disease related Characteristics by Applied Method of HMV (N=157)
Variables Categories Total (N=157) Non IHMV (n=55) IHMV (n=102) x2 or t p
n (%)/M±SD n (%)/M±SD n (%)/M±SD
Physical functional status 0.82±.087 1.75±0.61 0.32±0.51 14.88 <.001
   Diagnosis ALS 87 (55.1) 13 (23.6) 74 (75.2) 35.22 <.001
SMA & PMD 51 (32.9) 32 (58.2) 19 (18.6)
Others 19 (12.0) 10 (6.4) 9 (8.8)
Morbidity duration of disease (month) 100.53±73.82 128.75±77.31 85.38±67.55 3.51 .001
   Diagnosis ALSa 75.41±63.24 62.08±58.32 73.28±52.87
SMA & PMDb 141.26±69.69 151.93±66.60 125.00±75.01
Othersc 109.00±82.65 141.50±86.11 72.89±65.12
F (p) 13.92 (<.001) 7.42 (.002) 5.23 (.007)
  b>c>a b, c>a b>a, c
Utility duration of HMV (month) 43.42±35.37 44.43±35.09 42.87±35.68 0.26 .795
   Diagnosis ALS 39.20±31.50 34.69±24.16 40.18±32.91
SMA & PMD 52.00±38.53 47.97±36.70 57.29±42.31
Others 40.37±42.11 45.10±42.45 34.00±41.11
F (p) 1.78 (.154) 0.66 (.521) 1.90 (.155)
Applied hours of HMV (day) 18.77±7.17 11.79±6.08 22.46±4.47 -11.41 <.001
   Diagnosis ALSa 21.99±5.35 14.67±8.52 23.16±3.51
SMA & PMDb 14.40±6.95 10.77±4.67 20.33±5.88
Othersc 15.89±7.78 11.60±6.22 20.67±6.63
F (p) 26.04 (<.001) 1.86 (.165) 3.89 (.024)
  a>b, c   a>b, c
Type of HMV Volume 102 (65.0) 41 (74.5) 61 (59.8) 3.41 .065
Pressure 55 (35.0) 14 (25.5) 41 (40.2)
Parameter of HMV In case of TV 636.76±273.88 840.24±209.77 561±209.77 7.22 <.001
In case of PIP 13.41±4.38 11.82±5.09 13.97±4.02 -1.60 .116
Respiratory rate 15.43±4.41 14.69±3.13 15.85±4.94 -1.56 .120
Change of parameter (6 months) No 103 (65.6) 35 (63.6) 68 (66.7) 0.14 .764
Yes 54 (34.4) 20 (36.4) 34 (33.3)
Reason (yes only) RD 23 (33.3) 5 (19.2) 18 (11.4) 1.67 .232
Headache 23 (33.3) 10 (38.5) 13 (12.8)
Problem of HMV 4 (5.8) 1 (3.8) 3 (2.0)
After check up 6 (8.7) 0 (0.0) 6 (3.9)
Others 13 (18.8) 10 (38.5) 3 (7.0)
Changer of parameter Physician 74 (67.9) 35 (83.3) 39 (58.2)   .014
Home care nurse 13 (11.9) 4 (9.5) 9 (13.4)
Employer of equipment 22 (20.2) 3 (7.1) 19 (28.4)
Home nursing care No 60 (38.2) 48 (87.3) 12 (11.8) 86.28 <.001
Yes 97 (61.8) 7 (12.7) 90 (88.2)

Missing data be excluded; IHMV=invasive home mechanical ventilator; ALS=amytrophic lateral sclerosis; SMA=spinal muscular atrophy; PMD=primary muscular disease; TV=tidal volume; PIP=peak inspiratory pressure; RD=respiratory difficulty;

Fisher's exact test.

Table 3.
Comparisons of Self Care by Applied Method of HMV (N=157)
Variables Categories Total (N=157) Non IHMV (n=55) IHMV (n=102) x2 p
n (%) n (%) n (%)
HMV related Holding equipment (yes only) Equipment for suction 109 (69.9) 14 (12.8) 95 (87.2) 75.77 <.001
Equipment for oxygen 24 (15.4) 4 (16.7) 20 (83.3)   .061
Ambu bag 136 (87.2) 44 (32.4) 92 (67.6) 2.40 .121
Pulse oxymetry 80 (51.3) 26 (32.5) 54 (67.5) 0.33 .569
Assisted cough 84 (53.8) 49 (58.3) 35 (41.7) 4.00 .046
Changing cycle of circuit q 2 weeks 29 (23.4) 18 (37.5) 11 (14.3) 9.72 .008
q≥1 month 95 (76.6) 30 (62.5) 65 (85.7)
Changer of circuit Family caregiver 44 (29.7) 18 (33.4) 26 (27.7) 4.45 .218
Employer of company 80 (54.1) 24 (44.4) 56 (59.6)
Home care nurse 24 (16.2) 12 (22.2) 12 (12.8)
Changing cycle of filter q 2 weeks 11 (15.1) 1 (4.8) 10 (19.2)   .272
q 1 month and above 62 (74.9) 20 (95.5) 39 (75.0)
Changer of filter Family caregiver 103 (76.5) 33 (58.9) 68 (69.4)   .073
Employer of company 45 (29.0) 17 (30.4) 28 (28.6)
Home care nurse 7 (4.5) 6 (10.7) 2 (2.0)
Life habit related Respiratory exercise (yes only) Cough assisted coughing 90 (59.2) 35 (66.0) 55 (55.6)   .210
Postural drainage 18 (11.3) 3 (6.8) 15 (18.3)   .109
Chest vibration 10 (7.2) 3 (6.5) 7 (7.5)   1.000
Exercise of accumulated air 55 (41.0) 25 (55.6) 30 (33.7) 5.90 .015
Respiratory muscle exercise 29 (21.0) 15 (33.3) 14 (15.1)   .040
Suction of airway 104 (74.3) 9 (21.4) 95 (96.9)   <.001
General exercise No 61 (39.1) 23 (42.6) 38 (37.3) 0.42 .516
Yes 95 (60.9) 31 (57.4) 64 (62.7)    
Major type of meal Oral diet 74 (47.1) 48 (87.3.) 26 (25.5) 54.74 <.001
Tube feeding 83 (52.9) 7 (12.7) 76 (74.5)    
Elevated upper body during meal No 32 (20.8) 20 (38.5) 12 (11.8) 14.91 <.001
Yes 122 (79.2) 32 (61.5) 90 (88.2)    
Oral care No 18 (11.7) 10 (18.9) 8 (7.9) 4.05 .045
Yes 136 (88.3) 43 (81.1) 93 (92.1)    

Missing data be excluded; IHMV=invasive home mechanical ventilator;

Fisher's exact test;

Multiple respondent.

Table 4.
Comparisons by Applied Method and Influencing Factors on Respiratory Difficulty, Sleep Impediment, Anxiety, and Depression (N=157)
Variables Total (n=157) Non IHMV (n=55) IHMV (n=102) t (p) Variables (Constant) B β t p R2 Adj. R2
M±SD M±SD M±SD
Respiratory difficulty 0.88±1.10 0.76±1.07 0.95±1.18 -0.94 (Constant) 3.55   3.61 <.001 .16 .14
(.347) Anxiety 0.97 0.30 3.62 .002
Utility duration of HMV -0.02 -0.24 -2.57 .012
Gender (male) -1.31 -0.22 -2.31 .023
Sleep impediment 0.44±0.29 0.43±0.31 0.45±0.28 -0.41 (Constant) 1.30   5.88 <.001 .32 .28
(.681) SMA & PMD(yes) 0.50 0.32 2.91 .004
Duration of morbidity -0.01 -0.20 -2.05 .043
Applied method(IHMV) -0.48 -0.31 -3.08 .003
Changing cycle of circuit 0.31 0.19 2.13 .035
Anxiety 0.18 0.21 2.06 .042
Anxiety 1.41±0.85 0.96±0.77 1.69±0.83 -5.27 (Constant) 0.23   1.30 .198    
(<.001) Depression 0.62 0.62 8.42 <.001    
Sleep impediment 0.22 0.19 2.83 .006 .62 .60
Physical functional status -0.35 -0.33 -3.57 .001
HNC(yes) -0.43 -0.24 -2.73 .008
Depression 1.68±0.84 1.13±0.79 2.1±12 -6.60 (Constant) 0.53   3.02 .003 .66 .65
(<.001) Anxiety 0.51 0.51 7.24 <.001
Age 0.02 0.46 5.30 <.001
Duration of morbidity -0.01 -0.21 -2.70 .008

Missing data be excluded; Gender: Male (1) vs Female (0); Diagnosis: ALS (no) 0 vs SMA & PMD (yes)1; Applied method: non Invasive (0) vs Invasive (1); HNC (Home nursing care): No (0) vs Yes (1); IHMV=invasive home mechanical ventilator, SMA=spinal muscular atrophy; PMD=primary muscular disease; Adj. R

2 =Adjusted R

2 .

TOOLS
Similar articles