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Validation of the caregiver oncology quality of life questionnaire in Portuguese caregivers of myeloma patients

Published online by Cambridge University Press:  18 July 2019

M. Graça Pereira*
Affiliation:
School of Psychology, University of Minho, Braga, Portugal Psychology Research Center (CIPsi), University of Minho, Braga, Portugal
Margarida Vilaça
Affiliation:
Psychology Research Center (CIPsi), University of Minho, Braga, Portugal
Marta Pereira
Affiliation:
School of Psychology, University of Minho, Braga, Portugal Psychology Research Center (CIPsi), University of Minho, Braga, Portugal
Rosário Bacalhau
Affiliation:
Portuguese Institute of Oncology Francisco Gentil, Lisboa, Portugal
Sara Monteiro
Affiliation:
Department of Education and Psychology, University of Aveiro, Aveiro, Portugal Center for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
Bruna Fernandes
Affiliation:
Department of Education and Psychology, University of Aveiro, Aveiro, Portugal
Sara Faria
Affiliation:
School of Psychology, University of Minho, Braga, Portugal
Gabriela Ferreira
Affiliation:
School of Psychology, University of Minho, Braga, Portugal Psychology Research Center (CIPsi), University of Minho, Braga, Portugal
*
Corresponding Author: M. Graça Pereira, School of Psychology, University of Minho, Campus de Gualtar, 4710-057Braga, Portugal Email: [email protected]

Abstract

Objective

Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view.

Method

This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support.

Result

The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90).

Significance of results

The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2019

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References

Albagoush, SA and Azevedo, AM (2019) Cancer, Multiple Myeloma. Treasure Island, Florida: StatPearls Publishing.Google ScholarPubMed
American Cancer Society (2018) Survival Rates by Stage for Multiple Myeloma. Available at https://www.cancer.org/cancer/multiple-myeloma/detection-diagnosis-staging/survival-rates.html (accessed 5 March 2019).Google Scholar
Bevans, MF and Sternberg, EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Journal of the American Medical Association 307, 398403.Google ScholarPubMed
Cattell, RB (1966) The scree test for the number of factors. Multivariate Behavioral Research 1, 245276.CrossRefGoogle ScholarPubMed
Colgrove, LA, Kim, Y and Thompson, N (2007) The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. Annals of Behavioural Medicine 33, 9098.CrossRefGoogle ScholarPubMed
Coon, DW, Thompson, L, Steffen, A, Sorocco, K and Gallagher-Thompson, D (2003) Anger and depression management: psychoeducational skill training interventions for women caregivers of a relative with dementia. The Gerontologist 43, 678689.CrossRefGoogle ScholarPubMed
Cooper, C, Katona, C, Orrell, M and Livingston, G (2008) Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease. International Journal of Geriatric Psychiatry 23, 929936.CrossRefGoogle ScholarPubMed
Edwards, B and Ung, L (2002) Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties. Cancer Nursing 25, 342359.CrossRefGoogle ScholarPubMed
Flores, M, Berbis, J, Chinot, O and Auquier, P (2014) Assessing the quality of life among caregivers of patients with gliomas. Neuro-Oncology Practice 1, 191197.CrossRefGoogle Scholar
Friðriksdóttir, N, Saevarsdóttir, T, Halfdánardóttir, , et al. (2011) Family members of cancer patients: needs, quality of life and symptoms of anxiety and depression. Acta Oncologica 50, 252258.CrossRefGoogle ScholarPubMed
Fujinami, R, Sun, V, Zachariah, F, Uman, G, Grant, M and Ferrell, B (2015) Family caregivers’ distress levels related to quality of life, burden, and preparedness. Psycho-Oncology 24, 5462.CrossRefGoogle ScholarPubMed
Given, CW, Given, B, Stommel, M, Collins, C, King, S and Franklin, S (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health 15, 271283.CrossRefGoogle ScholarPubMed
Gozzetti, A, Candi, V, Papini, G and Bocchia, M (2014) Therapeutic advancements in multiple myeloma. Frontiers in Oncology 4, 241.CrossRefGoogle ScholarPubMed
Grunfeld, E, Coyle, D, Whelan, T, et al. (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal 170, 17951801.CrossRefGoogle ScholarPubMed
Hair, F, Anderson, R, Tatham, R and Black, W (1995) Multivariate Data Analysis with Readings, 5th Edn. Englewood Cliffs, NJ: Prentice-Hall.Google Scholar
Hair, JF, Black, WC, Babin, BJ and Anderson, RE (2010) Multivariate Data Analysis, 7th Edn. Upper Saddle River, NJ: Pearson Prentice Hall.Google Scholar
Horn, JL (1965) A rationale and test for the number of factors in factor analysis. Psychometrika 30, 179185.CrossRefGoogle ScholarPubMed
Hoyle, RH (1995) Structural Equation Modelling: Concepts, Issues and Applications. Thousand Oaks, CA: Sage Publications.Google Scholar
Iconomou, G, Viha, A, Kalofonos, HP and Kardamakis, D (2001) Impact of cancer on primary caregivers of patients receiving radiation therapy. Acta Oncologica 40, 766771.CrossRefGoogle ScholarPubMed
Janda, M, Steginga, S, Dunn, J, Langbecker, D, Walker, D and Eakin, E (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Education and Counseling 71, 251258.CrossRefGoogle ScholarPubMed
Johnsen, AT, Tholstrup, D, Petersen, MA, Pedersen, L and Groenvold, M (2009) Health related quality of life in a nationally representative sample of haematological patients. European Journal of Haematology 83, 139148.CrossRefGoogle Scholar
Kaiser, HF (1960) The application of electronic computers to factor analysis. Educational and Psychological Measurement 20, 141151.CrossRefGoogle Scholar
Kaveney, SC, Baumstarck, K, Minaya-Flores, P, et al. (2016) Validation of the American version of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire. Health and Quality of Life Outcomes 14, 19.CrossRefGoogle ScholarPubMed
Kim, Y and Given, BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112, 25562568.CrossRefGoogle ScholarPubMed
La, S and Yun, EK (2017) Effects of stress appraisal on the quality of life of adult patients with multiple myeloma and their primary family caregivers in Korea. Psycho-Oncology 26, 16401646.CrossRefGoogle ScholarPubMed
Lamers, J, Hartmann, M, Goldschmidt, H, Brechtel, A, Hillengass, J and Herzog, W (2013) Psychosocial support in patients with multiple myeloma at time of diagnosis: Who wants what? Psycho-Oncology 22, 23132320.Google Scholar
McMillan, SC and Mahon, M (1994) Measuring quality of life in hospice patients using a newly developed Hospice Quality of Life Index. Quality of Life Research 3, 437447.CrossRefGoogle ScholarPubMed
Michels, CT, Boulton, M, Adams, A, Wee, B and Peters, M (2016) Psychometric properties of carer-reported outcome measures in palliative care: a systematic review. Palliative Medicine 30, 2344.CrossRefGoogle ScholarPubMed
Minaya, P, Baumstarck, K, Berbis, J, et al. (2012) The Caregiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. European Journal of Cancer 48, 904911.CrossRefGoogle ScholarPubMed
Molassiotis, A, Wilson, B, Blair, S, Howe, T and Cavet, J (2011) Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psycho-Oncology 20, 8897.CrossRefGoogle ScholarPubMed
Ownsworth, T, Henderson, L and Chambers, SK (2010) Social support buffers the impact of functional impairments on caregiver psychological well-being in the context of brain tumor and other cancers. Psycho-Oncology 19, 11161122.CrossRefGoogle ScholarPubMed
Pais-Ribeiro, JL (1999) Escala de Satisfação com o Suporte Social (ESSS) [Satisfaction with Social Support Scale]. Análise Psicológica 3, 547558.Google Scholar
Pais-Ribeiro, J, Silva, I, Ferreira, T, Martins, A, Meneses, R and Baltar, M (2007) Validation study of a Portuguese version of the Hospital Anxiety and Depression Scale. Psychology, Health & Medicine 12, 225237.CrossRefGoogle ScholarPubMed
Park, CH, Shin, DW, Choi, JY, et al. (2012) Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psycho-Oncology 21, 289290.CrossRefGoogle ScholarPubMed
Pitceathly, C and Maguire, P (2003) The psychological impact of cancer on patients’ partners and other key relatives: a review. European Journal of Cancer 39, 15171524.CrossRefGoogle ScholarPubMed
Preacher, KJ and Coffman, DL (2006) Computing power and minimum sample size for RMSEA [Computer software]. Available at http://quantpsy.org/Google Scholar
Preacher, KJ, Cai, L and MacCallum, RC (2007) Alternatives to traditional model comparison strategies for covariance structure models. In Little, TD, Bovaird, JA and Card, NA (eds), Modeling Contextual Effects in Longitudinal Studies. Mahwah, NJ: Lawrence Erlbaum Associates, pp. 3362.Google Scholar
Ratnakar, S, Banupriya, C, Doureradjou, P, Vivekanandam, S, Srivastava, MK and Koner, BC (2008) Evaluation of anxiety, depression and urinary protein excretion among the family caregivers of advanced cancer patients. Biological Psychology 79, 234238.CrossRefGoogle ScholarPubMed
Robinson, BC (1983) Validation of a caregiver strain index. Journal of Gerontology 38, 344348.CrossRefGoogle ScholarPubMed
Simoneau, TL, Mikulich-Gilbertson, SK, Natvig, C, et al. (2013) Elevated peri-transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psycho-Oncology 22, 20642070.CrossRefGoogle ScholarPubMed
Shahi, V, Lapid, MI, Kung, S, et al. (2014) Do age and quality of life of the cancer patient influence quality of life of the caregiver? Journal of Geriatric Oncology 5, 331336.CrossRefGoogle ScholarPubMed
Smith, A, Howell, D, Patmore, R, Jack, A and Roman, E (2011) Incidence of haematological malignancy by sub-type: a report from the Haematological Malignancy Research Network. British Journal of Cancer 105, 16841692.CrossRefGoogle ScholarPubMed
Stenberg, U, Ruland, CM and Miaskowski, C (2010) Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 19, 10131025.CrossRefGoogle ScholarPubMed
Teixeira, RJ and Pereira, MG (2013) Psychological morbidity, burden, and the mediating effect of social support in adult children caregivers of oncological patients undergoing chemotherapy. Psycho-Oncology 22, 15871593.CrossRefGoogle ScholarPubMed
Ullman, JB (2001) Structural equation modeling. In Tabachnick, BG and Fidell, LS (eds), Using Multivariate Statistics, 4th Edn. Needham Heights, MA: Allyn & Bacon, pp. 653771.Google Scholar
Valeberg, BT and Grov, EK (2013) Symptoms in the cancer patient: Of importance for their caregivers' quality of life and mental health? European Journal of Oncology Nursing 17, 4651.CrossRefGoogle ScholarPubMed
Warapornmongkholkul, A, Howteerakul, N, Suwannapong, N and Soparattanapaisarn, N (2018) Self-efficacy, social support, and quality of life among primary family-member caregivers of patients with cancer in Thailand. Journal of Health Research 32, 111122.CrossRefGoogle Scholar
Ware, JE Jr and Sherbourne, CD (1992) The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Medical Care 30, 473483.Google Scholar
Weitzner, MA, Jacobsen, PB, Wagner, H Jr, Friedland, J and Cox, C (1999) The Caregiver Quality of Life Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of Life Research 8, 5563.CrossRefGoogle ScholarPubMed
Zarit, SH, Orr, NK and Zarit, JM (1985) The Hidden Victims Of Alzheimer's Disease: Families Under Stress. New York: New York University Press.Google Scholar
Zigmond, A and Snaith, R (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67, 361370.CrossRefGoogle ScholarPubMed