Keywords
neurology
reliability
family members
validity
Abstract
THE QUESTIONNAIRE FOR EVALUATING THE QUALITY OF LIFE OF FAMILY MEMBERS IN NEUROLOGY: PSYCHOMETRIC PROPERTIES OF THE CZECH VERSION OF THE PNDQOL_FM
Aim. The aim of the research was to validate the Quality of Life Questionnaire for family members of patients with progressive neurological disease PNDQoL_FM.
Material and methods. To analyze the psychometric properties of the questionnaire, a confi rmatory factor analysis (convergent validity of the questionnaire) was used, together with internal consistency of the scales (reliability), retest reliability, and correlation analysis. The research sample comprised of 157 family members of patients with PND.
Results. The psychometric properties of the PNDQoL_FM questionnaire were found satisfactory. The best concordance of a model and the data (CFI: 0.989; TLI: 0.973; RMSEA: 0.063; SRMR: 0.030; GFI: 0.977) was found for the model 2, where four domains of the functional scale were tested, i.e. activities of daily living, emotional functioning, social functioning, and spiritual area. The reliability of the individual subscales was also found satisfactory (Cronbach α: 0.735-0.923). The retest reliability was determined to be satisfactory for all domains as well (r>0.7).
Conclusions. The questionnaire PNDQoL_FM could be used for both research and clinical practice. The assessment of the quality of life of the PND patients’ family members may be a convenient indicator of the quality of provided care.
References
1. Oliver DJ, Borasio GD, Caraceni A, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. European Journal of Neurology. 2016; 23:30-38.
2. Golla H, Fink G, Rolke R, et al. New structures in neurology: Palliative care for neurological patients. Neurology International Open. 2017; 01:E117–E126.
3. Iris-Katharina P, Friedemann P. fatigue as a symptom or comorbidity of neurological diseases. Nature Review Neurology. 2017; 13(11):662-675
4. Das P, Naing NN, Wan-Arfah N, et al. Depression and quality of life in patients with neurological disorder in a Malaysian hospital. East Asian Archive of Psychiatry. 2019; 29:66-70.
5. Hellmann-Regen J, Piber D, Hinkelmann K. Depressive syndromes in neurological disorders. European Archives of Psychiatry and Clinical Neuroscience. 2013; 263:S123-S136.
6. Miyasaki JM, Kluger B. Palliative care for Parkinson´s disease: has the time come? Current Neurology Neuroscience Report. 2015; 15: 26.
7. Aarsland D, et al. Mental symptoms in Parkinson´s disease are important contributors to caregiver distress. International Journal of Geriatric Psychology. 1999; 14:866-74.
8. Abendroth M, Lutz BJ, Young ME. Family caregivers‘ decision process to institutionalize persons with Parkinson‘s disease: a grounded theory study. International Journal of Nursing Studies. 2012; 49(4):445-454.
9. Greenwell K, et al. Predictors of the psychosocial impact of being a career of people living with Parkinson’s disease: a systematic review. Parkinsonism and Related Disorders. 2015; 21(1): 1-11.
10. Galvin M, et al. Caregiving in ALS – a mixed methods approach to the study of burden. BMC Palliative Care. 2016; 5: 81.
11. O’Connor EJ, Mc Cabe MP. Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study. Quality of Life Research. 2011; 20: 703-711.
12. Wija P. Poskytování a financování dlouhodobé péče v zemích OECD (III) – poskytování neformální péče a její dopad na zaměstnanost a zdraví. [online] Praha: ÚZIS ČR 2012. derived from: http://www.uzis.cz/system/fi les/33_12.pdf
13. Martínez-Martín P, et al. Caregiver burden in Parkinson’s disease. Movement Disorders. 2007; 22: 924-921.
14. Razali R, et al. Burden of care among caregivers of patients with Parkinson disease: a cross-sectional study. Clinical Neurology and Neurosurgery. 2011; 113: 639-43.
15. The Irish Palliative Care in Parkinson’s Disease Group. Palliative care in People with Parkinson’s disease: Guidelines for professional healthcare workers on the assessment and management of palliative care needs in Parkinson’s disease and related Parkinsonian syndromes. Cork: University College Cork, 2016.
16. Terwee CB, Dekker FW, Wiersinga WM, et al. On assessing responsiveness of health-related quality of life instruments: guidelines for instrument evaluation. Quality of Life Research. 2003; 12: 349-362.
17. Trevittaya P. Concepts of quality of life. Journal of Associated Medical Sciences. 2016; 49(2): 171.
18. WHO. International Classification of Functioning, Disability and Health (ICF). (n.d.). WHO; World Health Organization? Retrieved 7 October 2020, from http://www.who. int/classifi cations/icf/en/.
19. Page TE, Farina N, Brown A, et al. Instruments measuring the dis ease specific quality of life of family carers of people with neurodegenerative dis eases: a systematic review. BMJ Open. 2017; 7(3): e013611.
20. Vickrey BG, Hays RD, Maines ML, et al. Development and preliminary evaluation of a quality of life measure targeted at dementia caregivers. Health and Quality of Life Outcomes. 2009; 7: 56.
21. Doward LC. The development of the Alzheimer’s carers quality of life instrument. Quality of Life Research. 1997; 6(Suppl 7-8): 639
22. Cole CC, Ito D, Chen YJ, et al. Impact of Alzheimer’s disease on caregiver questionnaire: internal consistency, convergent validity, and test-retest reliability of a new measure for assessing caregiver burden. Health Qual Life Outcomes. 2014; 12: 114.
23. Thomas P, Lal Loue F, Preux PM, et al. Dementia patients caregivers quality of life: the PIXEL study. International Journal of Geriatry Psychiatry. 2006; 21(1): 50-56.
24. Logsdon RG, Gibbons LE, McCurry SM, et al. Quality of life in Alzheimer‘s disease: patient and caregiver reports. Journla of Mental Health Aging. 1999; 5(1): 21-32.
25. Aubeeluck A, Buchanan H. The Huntington’s disease quality of life battery for carers: reliability and validity. Clinal Genetic. 2007; 71(5): 434-445.
26. Aubeeluck A, Dorey J, Squitieri F, et al. Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations. Quality of Life Research. 2013; 22(5): 1093-1098.
27. Benito-Leon J, Rivera-Navarro J, Guerrero AL, et al. The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis. Journal of Clinical Epidemiology. 2011; 64(6): 675-686.
28. Jenkinson C, Dummett S, Kelly L, et al. The development and validation of a quality of life measure for the carers of people with Parkinson’s disease (the PDQ-Carer). Parkinsonism and Related Disorders. 2012; 18(5): 483-487.
29. Morley D, Dummett S, Kelly L, et al. The PDQ-Carer: development and validation of a summary index score. Parkinsonism and Related Disorders. 2013; 19(4): 448-449.
30. Pillas M, Selai C, Quinn NP, et al. Development and validation of a carers quality-of-life questionnaire for Parkinsonism (PQoL Carers). Quality of Life Research. 2016; 25(1): 81-88.
31. Bužgová R, Kozáková R. Development and psychometric evaluation of a progressive neurological disease quality of life questionnaire (PNDQoL). Current psychology. 2021. Published first online us https://doi.org/10.1007/s12144-021-02183-8.
32. Bužgová R, Kozáková R. Dotazníky pro hodnocení kvality života pacientů s progresivním neurologickým onemocněním a jejich rodinných příslušníků: manual pro uživatele. Ostravská univerzita, 2020.
33. Boateng GO, Beilands T|B, Frongillo EA, et al. Best practices for developing and validating scales for health, social, and behavioral research: a primer. Frontiers in public health. 2018; 6: 1-18.
34. Mundfrom DJ, Shaw DG, Lu Ke T. Minimum sample recommendations for conducting factor analyses. International Journal of Testing. 2005; 5(2): 159-168.
35. Hooper D, Coughlan J, Mullen MR. Structural equation modelling: Guidelines for determining model fit. Electric Journal of Business Research Methods. 2008; 6: 53-60.
36. Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structur Eq Model. 1999; 6: 1-55.
37. Steiner DL, Norman GR. Health Measurement Scales. A Practical Guide to Their Development and Use. New York, Oxford University Press, 2003.
38. Peterson RA. A Meta-analysis of Cronbach’s Coefficient Alpha. Journal of Cons Research. 1994; 21: 381-391.
39. Ware JE, Gandek B. Methods for testing data quality, scaling assumptions, and reliability: the IQOLA Project approach. International Quality of Life Assessment. Journal of Clinical Epididemiology. 1998; 51: 945-952.
40. Charalambous A, Adamakidou T. Construction and validation of the quality of oncology nursing care scale. BMC Nursing. 2014; 13: 48.
41. Johnson S, et al. Quality of Life Perspectives of People with Amyotrophic Lateral Sclerosis and Their Caregivers. The American Journal of Occupational Therapy. 2017; 71(3): 7103190010p1-7103190010p7.
42. Strand JJ, et al. Top 10 things palliative care clinicians wished everyone knew about palliative care. Mayo Clinical Process. 2013;88(8):859–865.
43. Londral A, Pinto A, Pinto S et al. Quality of life in amyotrophic lateral sclerosis patients and caregivers: impact of assistive communication from early stages. Muscle & Nerve 2015; 52: 933-941.
44. Hussain J, Adams D, Campbell C. End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service. International Journal of Palliative Nursing. 2013; 19(4): 162-169.
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