Italian validation of the Belastungsfragebogen Parkinson kurzversion (BELA-P-k): a disease-specific questionnaire for evaluation of the subjective perception of quality of life in parkinson's disease

Paola Ortelli, Roberto Maestri, Marianna Zarucchi, Veronica Cian, Elisa Urso, Francesca Giacomello, Davide Ferrazzoli, Giuseppe Frazzitta, Paola Ortelli, Roberto Maestri, Marianna Zarucchi, Veronica Cian, Elisa Urso, Francesca Giacomello, Davide Ferrazzoli, Giuseppe Frazzitta

Abstract

Background: Quality of life (QoL) is the sense of well-being perceived by people. The improvement of parkinsonian patient's QoL is a crucial goal for clinicians involved in rehabilitative care. In order to provide an appropriate endpoint for the assessment of the effectiveness of rehabilitation treatments on QoL of patients with Parkinson's Disease (PD), in this study we have first translated and then validated the Belastungsfragebogen Parkinson kurzversion (BELA-P-k). This tool allows evaluating separately two crucial aspects: i) the loss of personal autonomy in activities of daily life and ii) the psychological and psychosocial impact of the disease.

Methods: The BELA-P-k was translated from Dutch into Italian. Subsequently 202 PD patients filled out the questionnaire. Patients were also evaluated by using the Parkinson Disease Questionnaire -39 (PDQ39), the Unified Parkinson's Disease Rating Scale (UPDRS), the Mini Mental State Examination (MMSE) and the Frontal Assessment Battery (FAB).

Results: The internal consistency for total of two different scores Bothered by (Bb) and Need for Help (NfH) was excellent (p = 0.91) for both categories. The correlation between Bb and NfH categories was significant and strong, very-strong, ranging from 0.78 to 0.88 (all p < 0.0001). Finally, the value of Spearman r for the relationship between Bb and NfH items and PDQ 39 values were significant (p ≤ 0.003).

Conclusions: In conclusion, we validated the BELA-P-k and demonstrated that it is an appropriate and potentially useful tool for assessing QoL in the management of PD.

Trials registration: This trial was retrospectively registered with ClinicalTrials.gov, NCT03073044.

Keywords: Quality of life; Rehabilitation treatment; Wellbeing.

References

    1. Tysnes OB, Storstein A. Epidemiology of Parkinson's disease. J Neural Transm (Vienna). 2017. doi:10.1007/s00702-017-1686-y.
    1. Frazzitta G, Maestri R, Bertotti G, Riboldazzi G, Boveri N, Perini M, et al. Intensive rehabilitation treatment in early Parkinson’s disease: a randomized pilot study with a 2-year follow-up. Neurorehabil Neural Repair. 2015;29:123–131. doi: 10.1177/1545968314542981.
    1. Gomez-Esteban JC, Zarranz JJ, Lezcano E, Tijero B, Luna A, Velasco F, et al. Influence of motor symptoms upon the quality of life of patients with Parkinson’s disease. Eur Neurol. 2007;57:161–165. doi: 10.1159/000098468.
    1. Global Parkinson's Disease Survey Steering Committee Factors impacting on quality of life in Parkinson’s disease: results from an international survey. Mov Disord. 2002;17:60–67. doi: 10.1002/mds.10010.
    1. Soh SE, McGinley JL, Watts JJ, Iansek R, et al. Determinants of health-related quality of life in people with Parkinson’s disease: a path analysis. Qual Life Res. 2013;22:1543–1553. doi: 10.1007/s11136-012-0289-1.
    1. Schrag A, Jahanshahi M, Quinn N. What contributes to quality of life in patients with Parkinson’s disease? J Neurol Neurosurg Psychiatry. 2000;69:308–312. doi: 10.1136/jnnp.69.3.308.
    1. Schrag A, Jahanshahi M, Quinn N. How does Parkinson’s disease affect quality of life? A comparison with quality of life in the general population. Mov Disord. 2000;15:1112–1118. doi: 10.1002/1531-8257(200011)15:6<1112::AID-MDS1008>;2-A.
    1. Smith Y, Wichmann T, Factor SA, DeLong MR. Parkinson's disease therapeutics: new developments and challenges since the introduction of Levodopa. Neuropsychopharmacology. 2012;37:213–246. doi: 10.1038/npp.2011.212.
    1. Tomlinson CL, Patel S, Meek C, Clarke CE, Stowe R, Shah L, et al. Physiotherapy versus placebo or no intervention in Parkinson's disease. Cochrane Database Syst Rev. 2012;11:CD002817.
    1. Bloem BR, de Vries NM, Ebersbach G. Nonpharmacological treatments for patients with Parkinson's disease. Mov Disord. 2015;30:1504–1520. doi: 10.1002/mds.26363.
    1. Goodwin VA, Richards SH, Taylor RS, Taylor AH, Campbell JL. The effectiveness of exercise interventions for people with Parkinson's disease: a systematic review and meta-analysis. Mov Disord. 2008;23:631–640. doi: 10.1002/mds.21922.
    1. Frazzitta G, Bertotti G, Riboldazzi G, Turla M, Uccellini D, Boveri N, et al. Effectiveness of intensive inpatient rehabilitation treatment on disease progression in parkinsonian patients: a randomized controlled trial with 1-year follow-up. Neurorehabil Neural Repair. 2012;26:144–150. doi: 10.1177/1545968311416990.
    1. Ekker MS, Janssen S, Nonnekes J, Bloem BR, de Vries NM. Neurorehabilitation for Parkinson's disease: future perspectives for behavioural adaptation. Parkinsonism Relat Disord. 2016;22(Suppl 1):S73–S77. doi: 10.1016/j.parkreldis.2015.08.031.
    1. Wood-Dauphinee S. Assessing quality of life in clinical research: from where have we come and where are we going? J Clin Epidemiol. 1999;52:355–363. doi: 10.1016/S0895-4356(98)00179-6.
    1. McKenna SP, Doward LC. The needs-based approach to quality of life assessment. Value Health. 2004;7:S1–S3. doi: 10.1111/j.1524-4733.2004.7s101.x.
    1. Soh S-E, McGinley JL, Morris ME. Measuring quality of life in Parkinson’s disease: selection of an appropriate health-related quality of life instrument. Physiotherapy. 2011;97:83–89. doi: 10.1016/j.physio.2010.05.006.
    1. Ellgring H, Seiler S, Perleth B, Frings W, Gasser T, Oertel W. Psychosocial aspects of Parkinson’s disease. Neurology. 1993;43(Suppl):41–44.
    1. Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Qual Life Res. 1995;4:241–248. doi: 10.1007/BF02260863.
    1. Ringendahl H, Werheid K, Leplow B, Ellgring H, Annecke R, Emmans D. Vorschlage fur eine standardisierte psychologische Diagnostik bei Parkinsonpatienten. Nervenarzt. 2000;71:946–954. doi: 10.1007/s001150050691.
    1. Spliethoff-Kamminga NG, Zwinderman AH, Springer MP, Roos RA. Psychosocial problems in Parkinson's disease: evaluation of a disease-specific questionnaire. Mov Disord. 2003;18:503–509. doi: 10.1002/mds.10388.
    1. National Collaborating Centre for Mental Health (UK) Dementia: a NICE-SCIE guideline on supporting people with dementia and their carers in health and social care. Leicester: British Psychological Society; 2007.
    1. Measso G, Cavarzeran F, Zappalà G, Lebowitz BD, Crock TH, Pirozzolo FJ, et al. The mini-mental state examination: normative study of an italian random sample. Neuropsychol. 1993;9:77–85.
    1. Appollonio I, Leone M, Isella V, Piamarta F, Consoli T, Villa ML, et al. The frontal assessment battery (FAB): normative values in an Italian population sample. Neurol Sci. 2005;26:108–116. doi: 10.1007/s10072-005-0443-4.
    1. Guyatt GH. The philosophy of health related QoL translation. Qual Life Res. 1993;2:461–465. doi: 10.1007/BF00422220.
    1. Guilleman F, Bombardier C, Beaton D. Cross-cultural adaptation of health related QoL measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46:1417–1432. doi: 10.1016/0895-4356(93)90142-N.
    1. Hays RD, Hayashi T. Beyond internal consistency reliability: rationale and user’s guide for Multitrait scaling analysis program on the microcomputer. Behav Res Methods Instrum Comput. 1990;22:167–175. doi: 10.3758/BF03203140.
    1. Rafferty MR, Schmidt PN, Luo ST, Li K, Marras C, Davis TL, Guttman M, Cubillos F, Simuni T; all NPF-QII Investigators. Regular Exercise, Quality of Life, and Mobility in Parkinson's Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data. J Parkinsons Dis. 2017;7(1):193–202. doi:10.3233/JPD-160912.
    1. De Boer AGEM, Wijker W, Speelman JD, de Haes JCJM. Quality of life in patients with Parkinson’s disease: development of a questionnaire. J Neurol Neurosurg Psychiatry. 1996;61:70–74. doi: 10.1136/jnnp.61.1.70.
    1. Zhu K, van Hilten JJ, Marinus J. Onset and evolution of anxiety in Parkinson's disease. Eur J Neurol. 2016;29. doi:10.1111/ene.13217.
    1. Heller J, Dogan I, Schulz JB, Reetz K. Evidence for gender differences in cognition, emotion and quality of life in Parkinson’s disease? Aging Dis. 2014;5:63–75.

Source: PubMed

3
订阅