Quality of Life Research

, Volume 14, Issue 2, pp 463–472 | Cite as

Quality of life of caregivers in Parkinson’s disease

  • Pablo Martínez-Martín
  • Julián Benito-León
  • Fernando Alonso
  • Mª José Catalán
  • M. Pondal
  • I. Zamarbide
  • A. Tobías
  • J. de Pedro
Article

Abstract

Objective: To assess the impact of PD on informal caregivers of patients and identify the main factors related to caregiver strain. Patients and methods: Pairs of PD patients and their caregivers. Evaluation by neurologists included the Hoehn and Yahr, Schwab and England, UPDRS (parts 1–3), ISAPD, and Pfeiffer’s SPMSQ rating scales. Patients completed the Euro-QoL 5D, PDQ-8, and Hospital Anxiety and Depression Scale. The SQLC was used to assess caregivers’ quality of life (QoL), with caregivers, in turn, applying the Euro-QoL and PDQ-8 to assess patients’ health-related quality of life (HRQoL). Multiple linear regression models were fitted to ascertain factors linked to the SQLC. Results: Significant correlations were in evidence between the following scores: SQLC and clinical rating scales and SQLC and patients’ HRQoL. Based on multiple regression analysis, patients’ functional state (ADL) proved to be the main predictor of caregivers’ QoL. Self- and caregiver-assessed patients’ HRQoL also proved to be a relevant factor. Conclusions: (1) Patients’ functional state was significantly related to caregivers’ psychosocial burden; (2) patients’ HRQoL proved to be an additional factor linked to caregiver QoL; (3) improvement of patient disability and HRQoL might alleviate caregiver strain.

Keywords

Assessment Caregivers Functional state Parkinson’s disease Quality of life 

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References

  1. Carter, JH 1999

    Quality of life in family caregivers of Parkinson’s disease patients.

    Martinez-Martin, PKoller, WC eds. Quality of Life in Parkinson’s DiseaseMasson SABarcelona137159
    Google Scholar
  2. Zarit, SH, Reever, KE, Bach-Peterson, J 1980Relatives of the impaired elderly: Correlates of feelings of burden.Gerontologist20649655Google Scholar
  3. Stommel, M, Given, CW, Given, BA 1990Depression as an overriding variable explaining caregiver burdens.J Aging Health281102Google Scholar
  4. Dunkin, JJ, Anderson-Hanley, C 1998Dementia caregiver burden: A review of the literature and guidelines for assessment and intervention.Neurology51 (Suppl 1)5360Google Scholar
  5. Schulz, RS, Beach, SR 1999Caregiving as a risk factor for mortality: The Caregiver Health Effects Study.JAMA28222152219Google Scholar
  6. Robinson, B, Thurnher, M 1979Taking care of aged parents: A family cycle transition.Gerontologist19586593Google Scholar
  7. Teel, CS, Press, AN 1999Fatigue among elders in caregiving and noncaregiving roles.West J Nurs Res21498514Google Scholar
  8. Wolters, EC 2001Intrinsic and extrinsic psychosis in Parkinson’s disease.J Neurol248 (Suppl 3)2227Google Scholar
  9. Carter, JH, Stewart, BJ, Archbold, PG, Inoue, I, Jaglin, J, Lannon, M,  et al. 1998Living with a person who has Parkinson’s disease: The spouse perspective by stage of disease.Mov Disord132028Google Scholar
  10. Aarsland, D, Larsen, JP, Karlsen, K, Lim, NG, Tandberg, E 1999Mental symptoms in Parkinson’s disease are important contributors to caregiver distress.Int J Geriatr Psychiatry14866874PubMedGoogle Scholar
  11. Habermann, B 2000Spousal perspective of Parkinson’s disease in middle life.J Adv Nurs3114091415Google Scholar
  12. Caap-Ahlgren, M, Dehlin, O 2002Factors of importance to the caregiver burden experienced by family caregivers of Parkinson’s disease patients.Aging Clin Exp Res14371377Google Scholar
  13. Fahn, S, Elton, RL 1987

    Unified Parkinson’s Disease Rating Scale.

    Fahn, SMarsden, CDCalne, DBGoldstein, M eds. Recent Developments in Parkinson’s DiseaseMacmillan Healthcare InformationFlorham Park, NJ153164Members of the UPDRS Development Committee. 2
    Google Scholar
  14. Martínez-Martín, P, Gil-Nagel, A, Morlán Gracia, L, Balseiro Gómez, J, Martínez-Sarriés, FJ, Bermejo, F,  et al. 1995Intermediate scale for assessment of Parkinson’s disease. characteristics and structure.Parkinsonism Relat Disord197102Google Scholar
  15. Pfeiffer, E 1975A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients.J Am Geriatr Soc23433441PubMedGoogle Scholar
  16. EuroQol Group1990EuroQol–a new facility for the measurement of health related quality of life.Health Policy16199208Google Scholar
  17. Badía, X, Roset, M, Montserrat, S, Herdman, M, Segura, A 1999La version española del EuroQoL: descripción y aplicaciones.Med Clin (Barc)112 (Supp 1)7986Google Scholar
  18. Jenkinson, C, Fitzpatrick, R, Peto, V, Greenhall, R, Hyman, N 1997The PDQ-8: Development and validation of a short-form Parkinson’s disease questionnaire.Psychol Health12805814Google Scholar
  19. Martínez Martín, P 2002Calidad de vida relacionada con la salud en la Enfermedad de ParkinsonMedicina stm Editores SLBarcelona1923Google Scholar
  20. Zigmond, AS, Snaith, RP 1983The hospital anxiety and depression scale.Acta Psychiatr Scand67361370PubMedGoogle Scholar
  21. Tejero, A, Guimerá, EM, Farré, JM,  et al. 1986Uso clínico del HAD (Hospital Anxiety and Depression Scale) en población psiquiátrica: Un estudio de su sensibilidad, fiabilidad y validez.Rev Depto Psiquiatria Facultad de Med Barna13233238Google Scholar
  22. Glozman, JM, Bicheva, KG, Fedorova, NV 1998Scale of quality of life of care-givers (SQLC).J Neurol245 (Suppl 1)3941Google Scholar
  23. Guerrero Diaz MT. Trastornos de conducta en la enfermedad de Parkinson. Doctoral Thesis. School of Medicine, Universidad Autónoma de Madrid, Spain, 2000.Google Scholar
  24. Martínez-Martín, P, Gil-Nagel, A, Morlán Gracia, L, Balseiro Gómez, J, Martínez Sarriés, J, Bermejo, F 1994Unified Parkinson’s Disease. Rating Scale characteristics and structure.Mov Disorders97683The Cooperative Multicentric GroupGoogle Scholar
  25. Hoehn, MM, Yahr, MD 1967Parkinsonism: Onset, progression, and mortality.Neurology17427442PubMedGoogle Scholar
  26. Schwab, RS, England, AC 1969

    Projection technique for evaluating surgery in Parkinson’s disease.

    Gillingham, FJDonaldson, IML eds. Third Symposium on Parkinson’s DiseaseE and S LivingstoneEdinburgh152157
    Google Scholar
  27. Movement Disorder Society Task Force on Rating Scales for Parkinson’s Disease2003The Unified Parkinson’s Disease Rating Scale (UPDRS): Status and recommendations.Mov Disord18738750Google Scholar
  28. Ramaker C, Marinus J, Stiggelbout AM, van Hilten JB. Systematic evaluation of rating scales for impairment and disability in Parkinson’s disease. Mov Disord 2002; 867–876.Google Scholar
  29. Montalvo, JIG, Rodríguez, L, Ruipérez, I 1992Validación del cuestionario de Pfeiffer y la escala de incapacidad mental de la Cruz Roja en la detección del deterioro mental en los pacientes externos de un servicio de geriatría.Rev Esp Geriat Gerontol27129133Google Scholar
  30. Badía, X, Montserrat, S, Roset, M, Herdman, M 1999Feasibility, validity, and test–retest reliability of scaling methods for health states: the visual analogue scale and the time trade-off.Qual Life Res8303310Google Scholar
  31. Peto, V, Jenkinson, C, Fitzpatrick, R, Greenhall, R 1995The development and validation of a short measure of functioning and well being for individuals with Parkinson’s disease.Qual Life Res4241248Google Scholar
  32. Marinus, J, Leentjens, AFG, Visser, M, Stiggelbout, AM, Hilten, JJ 2002Evaluation of the Hospital Anxiety and Depression Scale in patients with Parkinson’s disease.Clin Neuropharmacol25318324Google Scholar
  33. Martínez-Martín, P, Guerrero, MT, Frades, B, Fontán, C, Glozman, JM 1998Quality of life of caregivers: A new perspective on the consequences of Parkinson’s disease.Mov Disord13 (Suppl 2)63Google Scholar
  34. Edwards, NE, Scheetz, PS 2002Predictors of burden for caregivers of patients with Parkinson’s disease.J Neurosci Nurs34184190Google Scholar
  35. Melamed, E, Friedberg, G, Zoldan, J 1999Psychosis: Impact on the patient and family.Neurology52 (Suppl 3)1416Google Scholar
  36. Meara, J, Mitchelmore, E, Hobson, P 1999Use of the GDS-15 geriatric depression scales as a screening instrument for depressive symptomatology in patients with Parkinson’s disease and their carers in the community.Age Ageing283538Google Scholar
  37. Thommensen, B, Aarsland, D, Braekhus, A, Oksengaard, AR, Engedal Laake, K 2002The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson’s disease.Int J Geriatr Psychiatry177884Google Scholar
  38. Giménez-Roldán, S, Navarro, E, Mateo, D 2003Acción de quetiapina en dosis bajas sobre las manifestaciones psicóticas, incapacidad motora y estrés del cuidador en pacientes con enfermedad de Parkinson.Rev Neurol36401404Google Scholar
  39. Fernandez, HH, Tabamo, REJ, David, RR, Friedman, JH 2001Predictors of depressive symptoms among spouse caregivers in Parkinson’s disease.Mov Disord1611231125Google Scholar
  40. Happe, S, Berger, K, The, FAQT study investigators 2002The association between caregiver burden and sleep disturbances in partners of patients with Parkinson’s disease.Age Ageing31349354Google Scholar
  41. Whetten-Goldstein, K, Sloan, F, Kulas, E, Cutson, T, Schenkman, M 1997The burden of Parkinson’s disease on society, family, and the individual.J Am Geriatr Soc45844849Google Scholar
  42. Perozzo, P, Rizzone, M, Bergamasco, B, Castelli, L, Lanotte, M, Tavella, A,  et al. 2001Deep brain stimulation of subthalamic nucleus: Behavioural modifications and familiar relations.Neurol Sci228182CrossRefPubMedGoogle Scholar
  43. Edwards, NE, Ruettiger, KM 2002The influence of caregiver burden on patients’ management of Parkinson’s disease: Implications for rehabilitation nursing.Rehabil Nursing27182186Google Scholar
  44. Trend, P, Kaye, J, Gage, H, Owen, C, Wade, D 2002Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers.Clin Rehabil16717725Google Scholar
  45. Miller, B, Cafasso, L 1992Gender differences in caregiving: Fact or artifact?Gerontologist32498507Google Scholar
  46. Navaie-Waliser, M, Spriggs, A, Feldman, PH 2002Informal caregiving. Differential experiences by gender.Med Care4012491259Google Scholar

Copyright information

© Springer 2005

Authors and Affiliations

  • Pablo Martínez-Martín
    • 1
  • Julián Benito-León
    • 2
  • Fernando Alonso
    • 3
  • Mª José Catalán
    • 4
  • M. Pondal
    • 5
  • I. Zamarbide
    • 3
  • A. Tobías
    • 6
  • J. de Pedro
    • 1
  1. 1.Centro Nacional de Epidemiología, Instituto de Salud Carlos IIIUnidad de NeuroepidemiologíaMadridSpain
  2. 2.Department of NeurologyMóstoles HospitalNavarreSpain
  3. 3.Department of Neurology, Pamplona University Teaching ClinicNavarreSpain
  4. 4.Department of NeurologySan Carlos University Teaching HospitalMadridSpain
  5. 5.Department of NeurologySevero Ochoa HospitalLeganésSpain
  6. 6.Department of StatisticsCarlos III UniversityMadridSpain

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