Hostname: page-component-78c5997874-mlc7c Total loading time: 0 Render date: 2024-11-19T09:49:40.824Z Has data issue: false hasContentIssue false
  • English
  • Français

The amyotrophic lateral sclerosis supportive care needs assessment instrument: Development and psychometric evaluation

Published online by Cambridge University Press:  29 January 2018

Juyeon Oh ,
Seong-il Oh  and
Jung A Kim
Juyeon Oh
Affiliation:
Division of Nursing, Hanyang University and Cell therapy Center for Intractable Disorders, Hanyang University Hospital, Seoul
Seong-il Oh
Affiliation:
Department of Neurology, Busan Paik Hospital, Inje University College of Medicine, Busan
Jung A Kim*
Affiliation:
Division of Nursing, Hanyang University, Seoul, Korea
*
Author for correspondence: Jung A Kim, Division of Nursing, Hanyang University, 222 Wangsimni-ro, Seongdong-gu, Seoul, 04763, Korea. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The aim of the study is to develop an amyotrophic lateral sclerosis supportive care needs (ALSSCN) instrument based on Fitch's Supportive Care Needs Framework and to test its psychometric properties.

Method

This study consists of three parts: (1) item generation from the literature review and qualitative interview; (2) content validation; and (3) psychometric evaluation of the instrument. Participants who were diagnosed with ALS (n = 139) were recruited from two ALS clinics in Seoul, Korea, and Busan, Korea for the psychometric testing.

Result

The ALSSCN consisted of 37 items with seven domains: physical, psychological, emotional, spiritual, social, informational, and practical needs. The Cronbach's alpha of each domain ranged from 0.61 (social needs) to 0.90 (emotional needs). The intra-class correlation coefficient for test-retest was 0.89, indicating good test-retest reliability. The overall ALSSCN was significantly negatively correlated with the quality of life, which supported convergent validity. Confirmatory factor analysis of the ALSSCN supported a seven-factor model.

Significance of results

The ALSSCN has acceptable internal consistency, stability, and content and construct validity in a Korean ALS population. ALSSCN is a psychometrically sound measure and can be adopted by healthcare professionals, researchers, and administrators to comprehensively assess the perceived supportive care needs of patients with ALS.

Keywords

Amyotrophic lateral sclerosishealth services needsneeds assessmentpsychometricsquestionnaires
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 6 , December 2018 , pp. 692 - 697
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Brooks, BR, Miller, RG, Swash, M, et al. (2000) El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 1(5), 293–299.Google Scholar
Cedarbaum, JM, Stambler, N, Malta, E, et al. (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). Journal of the Neurological Sciences 169(1–2), 13–21.Google Scholar
Chio, A, Logroscino, G, Traynor, BJ, et al. (2013) Global epidemiology of amyotrophic lateral sclerosis: A systematic review of the published literature. Neuroepidemiology 41(2), 118–130.Google Scholar
Clarke, K and Levine, T (2011) Clinical recognition and management of amyotrophic lateral sclerosis: The nurse's role. Journal of Neuroscience Nursing 43(4), 205–214.Google Scholar
Cohen, SR, Mount, BM, Strobel, MG, et al. (1995) The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliative Medcine 9(3), 207–219.Google Scholar
DeVellis, RF (2016) Scale development: Theory and applications. Thousand Oaks, CA: Sage Publications.Google Scholar
Fitch, MI (2008) Supportive care framework. Canadian Oncology Nursing Journal 18(1), 6–24.Google Scholar
Freeman, S, Hirdes, JP, Stolee, P, et al. (2014) Care planning needs of palliative home care clients: Development of the interRAI palliative care assessment clinical assessment protocols (CAPs). BMC Palliative Care 13(1), 58.Google Scholar
Galvin, M, Corr, B, Madden, C, et al. (2016) Caregiving in ALS – A mixed methods approach to the study of burden. BMC Palliative Care 15(1), 81.Google Scholar
Howell, D, Molloy, S, Wilkinson, K, et al. (2015) Patient-reported outcomes in routine cancer clinical practice: A scoping review of use, impact on health outcomes, and implementation factors. Annals of Oncology 26(9), 1846–1858.Google Scholar
Huijg, JM, Gebhardt, WA, Dusseldorp, E, et al. (2014) Measuring determinants of implementation behavior: Psychometric properties of a questionnaire based on the theoretical domains framework. Implementation Science 9, 33.Google Scholar
Hwang, SS, Chang, VT, Cogswell, J, et al. (2004) Study of unmet needs in symptomatic veterans with advanced cancer: Incidence, independent predictors and unmet needs outcome model. Journal of Pain and Symptom Management 28(5), 421–432.Google Scholar
Jenkinson, C, Fitzpatrick, R, Brennan, C, et al. (1999) Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: The ALSAQ-40. Journal of Neurology 246(Suppl 3), III16–21.Google Scholar
Lynn, MR (1986) Determination and quantification of content validity. Nursing Research 35(6), 382–385.Google Scholar
MacIsaac, L, Harrison, MB, and Godfrey, C (2010) Supportive care needs of caregivers of individuals following stroke: A synopsis of research. Canadian Journal of Neuroscience Nursing 32(1), 39–46.Google Scholar
Mak, AK, Mackenzie, A, and Lui, MH (2007) Changing needs of Chinese family caregivers of stroke survivors. Journal of Clinical Nursing 16(5), 971–979.Google Scholar
Malfait, S, Eeckloo, K, Van Daele, J, et al. (2016) The Patient Participation Culture Tool for healthcare workers (PaCT-HCW) on general hospital wards: A development and psychometric validation study. International Journal of Nursing Studies 61, 187–197.Google Scholar
Mukaka, MM (2012) A guide to appropriate use of correlation coefficient in medical research. Malawi Medical Journal 24(3), 69–71.Google Scholar
Nunnally, J (1978) Psychometric theory. New York, NY: McGraw-Hill.Google Scholar
Oh, J, An, JW, Oh, KW, et al. (2015) Depression and caregiving burden in families of patients with amyotrophic lateral sclerosis. Journal of Korean Academy of Nursing 45(2), 202–210.Google Scholar
Oh, J, Hong, GS, Kim, SH, et al. (2017). Translation and psychometric evaluation of a Korean version of the amyotrophic lateral sclerosis-specific quality of life – revised. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 18(1–2), 92–98.Google Scholar
Oh, J and Kim, JA (2017) Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review. Journal of Clinical Nursing 26(23–24), 4129–4152.Google Scholar
Pelentsov, LJ, Laws, TA and Esterman, AJ (2015) The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disability and Health Journal 8(4), 475–491.Google Scholar
Ponzio, M, Tacchino, A, Zaratin, P, et al. (2015) Unmet care needs of people with a neurological chronic disease: A cross-sectional study in Italy on multiple sclerosis. European Journal of Public Health 25(5), 775–780.Google Scholar
Richardson, A, Medina, J, Brown, V, et al. (2007) Patients’ needs assessment in cancer care: A review of assessment tools. Supportive Care in Cancer 15(10), 1125–1144.Google Scholar
Roche, JC, Rojas-Garcia, R, Scott, KM, et al. (2012) A proposed staging system for amyotrophic lateral sclerosis. Brain 135(Pt 3), 847–852.Google Scholar
Sabatelli, M, Conte, A and Zollino, M (2013) Clinical and genetic heterogeneity of amyotrophic lateral sclerosis. Clinical Genetics 83(5), 408–416.Google Scholar
Simmons, Z, Felgoise, SH, Bremer, BA, et al. (2006) The ALSSQOL: Balancing physical and nonphysical factors in assessing quality of life in ALS. Neurology 67(9), 1659–1664.Google Scholar
Waller, A, Girgis, A, Lecathelinais, C, et al. (2010) Validity, reliability and clinical feasibility of a needs assessment tool for people with progressive cancer. Psychooncology 19(7), 726–733.Google Scholar
Zarei, S, Carr, K, Reiley, L, et al. (2015) A comprehensive review of amyotrophic lateral sclerosis. Surgical Neurology International 6, 171.Google Scholar
Supplementary material: File

Oh et al. supplementary material

Appendix

Download Oh et al. supplementary material(File)
File 21.3 KB