An international validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease.

Journal article


Aubeeluck, Aimee, Stupple, Edward J. N., Schofield, M., Hughes, Alis C., van der Meer, Lucienne, Landwehrmeyer, Bernhard and Ho, Aileen K. 2019. An international validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease. Frontiers in Psychology. 10. https://doi.org/10.3389/fpsyg.2019.01658
AuthorsAubeeluck, Aimee, Stupple, Edward J. N., Schofield, M., Hughes, Alis C., van der Meer, Lucienne, Landwehrmeyer, Bernhard and Ho, Aileen K.
Abstract

Family carers of individuals living with Huntington’s disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life (QoL) for this group. The Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) was expanded (n = 47) and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half of the sample demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) (n = 23) was developed based on more stringent criteria. This was achieved using standard psychometric item reduction techniques to both increase reliability and reduce the burden of carers completing the scale. Confirmatory factor analysis of the model structure showed a good fit for all factors and indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of QoL. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future, and overall QoL. Carers with children who were at risk carried the gene or were symptomatic also had poorer QoL outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported QoL in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population and research into international and cross-cultural carer experiences. The HDQoL-Cs is recommended as the definitive international measure of HD carer QoL.

Keywordsfamily caregiving; psychometrics; carers; quality of life; Huntington’s disease
Year2019
JournalFrontiers in Psychology
Journal citation10
PublisherFrontiers
ISSN1664-1078
Digital Object Identifier (DOI)https://doi.org/10.3389/fpsyg.2019.01658
Web address (URL)https://www.frontiersin.org/article/10.3389/fpsyg.2019.01658/full
http://creativecommons.org/licenses/by-nc-nd/3.0/us/
hdl:10545/624041
Output statusPublished
Publication dates23 Jul 2019
Publication process dates
Deposited31 Jul 2019, 10:51
Accepted01 Jul 2019
Rights

Attribution-NonCommercial-NoDerivs 4.0 United States

ContributorsUniversity of Derby, University of Nottingham, Leiden University Medical Centre, Ulm University Medical Center and University of Reading
File
File Access Level
Open
File
File Access Level
Open
Permalink -

https://repository.derby.ac.uk/item/93y2z/an-international-validation-of-a-clinical-tool-to-assess-carers-quality-of-life-in-huntington-s-disease

Download files

  • 16
    total views
  • 2
    total downloads
  • 3
    views this month
  • 0
    downloads this month

Export as

Related outputs

Standardised colour-coded compartmentalised syringe trays improve anaesthetic medication visual search and mitigate cognitive load
Victoria Laxton, Frances A. Maratos, David W. Hewson, Andrew Baird, Edward J.N. Stupple and Stupple, E. 2023. Standardised colour-coded compartmentalised syringe trays improve anaesthetic medication visual search and mitigate cognitive load. British Journal of Anaesthesia. pp. 1-8. https://doi.org/10.1016/j.bja.2022.11.012
Exploring the role of compassion, self-criticism and the dark triad on obesity and emotion regulation
Schofield, M. 2022. Exploring the role of compassion, self-criticism and the dark triad on obesity and emotion regulation.
Narcissism, national narcissism, COVID-19 conspiracy belief, and social media use as predictors of compliance with COVID-19 public health guidelines
Vaal, S., Schofield, M., Baker, I. and Roberts, B. 2022. Narcissism, national narcissism, COVID-19 conspiracy belief, and social media use as predictors of compliance with COVID-19 public health guidelines. Current Psychology. pp. 1-8. https://doi.org/10.1007/s12144-022-03715-6
Metarepresentations of Supernatural Belief and the Effect of Context on Cognition
Schofield, M., Sheffield, D. and Baker, I. 2022. Metarepresentations of Supernatural Belief and the Effect of Context on Cognition. Journal of Scientific Exploration. 36 (2), pp. 1-16. https://doi.org/10.31275/20222501
Exploring Pattern Recognition: What is the relationship between the recognition of words, faces and other objects?
Frances Maratos, Kar-Man Chu, Sigrid Lipka, Edward Stupple and Fabio Parente 2022. Exploring Pattern Recognition: What is the relationship between the recognition of words, faces and other objects? Research Square. https://doi.org/10.21203/rs.3.rs-348237/v1
The Impact of Attitudes, Beliefs, and Cognitive Reflection on the Development of Critical Thinking Skills in Online Students
Simonovic, B., Correa Vione, K., Fido, D., Stupple, E., Martin, J. and Clarke, R. 2022. The Impact of Attitudes, Beliefs, and Cognitive Reflection on the Development of Critical Thinking Skills in Online Students. Online Learning . 26 (2), pp. 254-274. https://doi.org/10.24059/olj.v26i2.2725
Student Primacy and the Post Pandemic University
Carl Senior, Howard, C., Edward J. N. Stupple, Rowena Senior and Stupple, E. 2021. Student Primacy and the Post Pandemic University. Frontiers in Education. https://doi.org/10.3389/feduc.2021.712767
Tales From the Dark Side: The Dark Tetrad of Personality, Supernatural, and Scientific Belief
Schofield, M., Roberts, B., Harvey, C., Baker, I. and Crouch, G. 2021. Tales From the Dark Side: The Dark Tetrad of Personality, Supernatural, and Scientific Belief. Journal of Humanistic Psychology. 62 (2), pp. 1-18. https://doi.org/10.1177/00221678211000621
Negative self-referential emotions and mental health in youth: The importance of self-criticism.
Ashra, H., Barnes, C., Stupple, E. and Maratos, F. 2021. Negative self-referential emotions and mental health in youth: The importance of self-criticism. Current Research In Psychiatry . 1 (4), pp. 63-67.
A systematic review of self-report measures of negative self-referential emotions developed for non-clinical child and adolescent samples
Ashra, Hajra, Barnes, Christopher, Stupple, Edward and Maratos, Frances A. 2021. A systematic review of self-report measures of negative self-referential emotions developed for non-clinical child and adolescent samples. Springer Science and Business Media LLC. https://doi.org/10.1007/s10567-020-00339-9
Modelling Supernatural Belief: Cognition and Personality
Schofield, M., Baker, I., Staples, P. and Sheffield, D. 2020. Modelling Supernatural Belief: Cognition and Personality. Journal of the Society for Psychical Research. 84 (3), pp. 129-156.
Measuring actions for nature—development and validation of a pro-nature conservation behaviour scale
Barbett, Lea, Stupple, Edward, Sweet, Michael, Schofield, M. and Richardson, Miles 2020. Measuring actions for nature—development and validation of a pro-nature conservation behaviour scale. Sustainability. https://doi.org/10.3390/su12124885
Motivation to Change Lifestyle for Dementia Risk Reduction Scale--Brief
Deborah Oliveira, Aimee Aubeeluck, Stupple, E., Sarang Kim and Martin Orrell 2019. Motivation to Change Lifestyle for Dementia Risk Reduction Scale--Brief. American Psychological Association (APA). https://doi.org/10.1037/t74509-000
Exceptional Experiences: CEP's 20th Annual Conference (Review)
Schofield, M. 2019. Exceptional Experiences: CEP's 20th Annual Conference (Review).
The impact of pop-up warning messages of losses on expenditure in a simulated game of roulette: A pilot Study
McGivern, Paul, Hussain, Zaheer, Lipka, Sigrid and Stupple, Edward 2019. The impact of pop-up warning messages of losses on expenditure in a simulated game of roulette: A pilot Study. BMC Public Health. https://doi.org/10.1186/s12889-019-7191-5
Mental Models or Probabilistic Reasoning or Both
Natasha Beeson, Edward J. N. Stupple, Malcolm B. Schofield, Paul Staples and Stupple, E. 2019. Mental Models or Probabilistic Reasoning or Both. Psihologijske teme. https://doi.org/10.31820/pt.28.1.2
Exploring the reliability and validity of the Huntington’s Disease quality of life battery for carers (HDQoL-C) within a Polish population
Aubeeluck, Aimee, Stupple, Edward, Bartoszek, A, Kocka, K, Ślusarska, B and Stupple, Edward J. N. 2019. Exploring the reliability and validity of the Huntington’s Disease quality of life battery for carers (HDQoL-C) within a Polish population. International Journal of Environmental Research and Public Health. https://doi.org/10.3390/ijerph16132323
Using eye tracking to explore Facebook use and associations with Facebook addiction, mental well-being, and personality
Hussain, Zaheer, Simonovic, B., Stupple, Edward and Austin, Maggie 2019. Using eye tracking to explore Facebook use and associations with Facebook addiction, mental well-being, and personality. Behavioral Sciences. 9 (2), p. 19. https://doi.org/10.3390/bs9020019
Assessing Domain Specificity in the Measurement of Mathematics Calculation Anxiety
Hunt, Thomas E., Bagdasar, Ovidiu, Sheffield, David and Schofield, M. 2019. Assessing Domain Specificity in the Measurement of Mathematics Calculation Anxiety. Education Research International. 2019, pp. 1-7. https://doi.org/10.1155/2019/7412193
Development and validation of the satisfaction with treatment for pain questionnaire (STPQ) among patients with sickle cell disease
Bij, Deepali, Kapadi, Romaana, Schofield, M., Osias, Arlene, Khalid, Nosheen, Kaya, Banu, Telfer, Paul and Elander, James 2019. Development and validation of the satisfaction with treatment for pain questionnaire (STPQ) among patients with sickle cell disease. British Journal of Haematology. https://doi.org/10.1111/bjh.16015
Sweating the small stuff: a meta-analysis of skin conductance on the Iowa gambling task
Simonovic, B., Stupple, Edward J. N., Gale, Maggie and Sheffield, David 2019. Sweating the small stuff: a meta-analysis of skin conductance on the Iowa gambling task. Cognitive, Affective, & Behavioral Neuroscience. https://doi.org/10.3758/s13415-019-00744-w
Factor and reliability analysis of a brief scale to measure motivation to change lifestyle for dementia risk reduction in the UK: the MOCHAD-10.
Oliveira, Deborah, Aubeeluck, Aimee, Stupple, Ed, Kim, Sarang and Orrell, Martin 2019. Factor and reliability analysis of a brief scale to measure motivation to change lifestyle for dementia risk reduction in the UK: the MOCHAD-10. Health and Quality of Life Outcomes. https://doi.org/10.1186/s12955-019-1143-8
Exploring the experience of novelty when viewing creative adverts: An ERP study.
Zhou, Shujin, Yin, Yue, Yu, Tingting, Stupple, Edward J. N. and Luo, Junlong 2018. Exploring the experience of novelty when viewing creative adverts: An ERP study. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2018.00471
Creation and Validation of the Belief in the Supernatural Scale
Schofield, M., Baker, I., Staples, P. and Sheffield, D. 2018. Creation and Validation of the Belief in the Supernatural Scale. Journal of Parapsychology. 82 (1), pp. 41-84. https://doi.org/10.30891/jopar.2018.01.04
Performance Under Stress: An Eye-Tracking Investigation of the Iowa Gambling Task (IGT)
Boban Simonovic, Edward J. N. Stupple, Maggie Gale, David Sheffield and Stupple, E. 2018. Performance Under Stress: An Eye-Tracking Investigation of the Iowa Gambling Task (IGT). Frontiers in Behavioral Neuroscience. https://doi.org/10.3389/fnbeh.2018.00217
The Monty Hall problem revisited: Autonomic arousal in an inverted version of the game.
Massad, Eduardo, dos Santos, Paulo Cesar Costa, da Rocha, Armando Freitas and Stupple, Edward J. N. 2018. The Monty Hall problem revisited: Autonomic arousal in an inverted version of the game. PLos ONE. https://doi.org/10.1371/journal.pone.0192542
Event-related potentials support a dual process account of the Embedded Chinese Character Task
Stupple, E. 2018. Event-related potentials support a dual process account of the Embedded Chinese Character Task. Neuropsychologia. https://doi.org/10.1016/j.neuropsychologia.2018.10.021
Figural effects in a syllogistic evaluation paradigm
Stupple, Edward J. N. and Ball, Linden J. 2007. Figural effects in a syllogistic evaluation paradigm. Experimental Psychology. https://doi.org/10.1027/1618-3169.54.2.120
Motivational and behavioural models of change: A longitudinal analysis of change among men with chronic haemophilia-related joint pain
Elander, James, Richardson, Cassandra, Morris, John, Robinson, Georgina and Schofield, M. 2017. Motivational and behavioural models of change: A longitudinal analysis of change among men with chronic haemophilia-related joint pain. European Journal of Pain. https://doi.org/10.1002/ejp.1040
Conflict and Dual Process Theory
Linden J. Ball, Valerie A. Thompson, Edward J. N. Stupple and Stupple, E. 2017. Conflict and Dual Process Theory. in: De Neys, W. (ed.) Dual Process Theory 2.0 Abingdon, Oxfordshire Routledge.
Slower is not always better: Response-time evidence clarifies the limited role of miserly information processing in the Cognitive Reflection Test
Stupple, Edward J. N., Pitchford, Melanie, Ball, Linden J., Hunt, Thomas E. and Steel, Richard 2017. Slower is not always better: Response-time evidence clarifies the limited role of miserly information processing in the Cognitive Reflection Test. PLos ONE. https://doi.org/10.1371/journal.pone.0186404
Pupil dilation and cognitive reflection as predictors of performance on the Iowa Gambling Task
Simonovic, B., Stupple, Edward J. N., Gale, Maggie and Sheffield, David 2017. Pupil dilation and cognitive reflection as predictors of performance on the Iowa Gambling Task. Cognitive Science Society.
Development and validation of a short-form Pain Medication Attitudes Questionnaire (PMAQ-14)
Elander, James, Said, Omimah, Maratos, Frances A., Dys, Ada, Collins, Hannah and Schofield, M. 2017. Development and validation of a short-form Pain Medication Attitudes Questionnaire (PMAQ-14). Pain. 158 (3), pp. 400-407. https://doi.org/10.1097/j.pain.0000000000000773
Dual Reasoning Processes and the Resolution of Uncertainty: The Case of Belief Bias
Stupple, E. and Ball, L. J. 2016. Dual Reasoning Processes and the Resolution of Uncertainty: The Case of Belief Bias. in: Macchi, L., Bagassi, M. and Viale, R. (ed.) Cognitive Unconscious and Human Rationality Cambridge, Massachusetts MIT Press. pp. 143-166
Do student nurses experience Imposter Phenomenon? An international comparison of Final Year Undergraduate Nursing Students readiness for registration
Christensen, Martin, Aubeeluck, Aimee, Fergusson, Diana, Craft, Judy, Knight, Jessica, Wirihana, Lisa and Stupple, Edward J. N. 2016. Do student nurses experience Imposter Phenomenon? An international comparison of Final Year Undergraduate Nursing Students readiness for registration. Journal of Advanced Nursing.. https://doi.org/10.1111/jan.13034
Stress and risky decision making: Cognitive reflection, emotional learning or both.
Simonovic, B., Stupple, Edward J. N., Gale, Maggie and Sheffield, David 2016. Stress and risky decision making: Cognitive reflection, emotional learning or both. Journal of Behavioral Decision Making. https://doi.org/10.1002/bdm.1980
Mental representations of the supernatural: A cluster analysis of religiosity, spirituality and paranormal belief
Schofield, M., Baker, Ian S., Staples, Paul and Sheffield, David 2016. Mental representations of the supernatural: A cluster analysis of religiosity, spirituality and paranormal belief. Personality and Individual Differences. https://doi.org/10.1016/j.paid.2016.06.020
Academics’ understandings of the authorial academic writer: a qualitative analysis of authorial identity
Cheung, Kevin Yet Fong, Elander, James, Stupple, Edward J. N. and Flay, Mike 2016. Academics’ understandings of the authorial academic writer: a qualitative analysis of authorial identity. Studies in Higher Education. https://doi.org/10.1080/03075079.2016.1264382
Do graduate entry nursing student’s experience ‘Imposter Phenomenon’?: An issue for debate
Aubeeluck, Aimee, Stacey, Gemma and Stupple, Edward J. N. 2016. Do graduate entry nursing student’s experience ‘Imposter Phenomenon’?: An issue for debate. Nurse Education in Practice. https://doi.org/10.1016/j.nepr.2016.06.003
Development of the critical thinking toolkit (CriTT): A measure of student attitudes and beliefs about critical thinking
Stupple, Edward J. N., Maratos, Frances A., Elander, James, Hunt, Thomas E., Cheung, Kevin Yet Fong and Aubeeluck, Aimee 2016. Development of the critical thinking toolkit (CriTT): A measure of student attitudes and beliefs about critical thinking. Thinking Skills and Creativity. 23, pp. 91-100. https://doi.org/10.1016/j.tsc.2016.11.007
Normative benchmarks are useful for studying individual differences in reasoning
Stupple, Edward J. N. and Ball, Linden J. 2011. Normative benchmarks are useful for studying individual differences in reasoning. Behavioral and Brain Sciences. https://doi.org/10.1017/S0140525X11000562
Negations in syllogistic reasoning: Evidence for a heuristic–analytic conflict
Stupple, Edward J. N. and Waterhouse, Eleanor F. 2009. Negations in syllogistic reasoning: Evidence for a heuristic–analytic conflict. The Quarterly Journal of Experimental Psychology. https://doi.org/10.1080/17470210902785674
The chronometrics of confirmation bias: Evidence for the inhibition of intuitive judgements
Stupple, Edward J. N. and Ball, Linden J. 2011. The chronometrics of confirmation bias: Evidence for the inhibition of intuitive judgements. Behavioral and Brain Sciences. https://doi.org/10.1017/S0140525X10002876
Cognitive control in belief-laden reasoning during conclusion processing: An ERP study
Luo, Junlong, Liu, Xin, Stupple, Edward J. N., Zhang, Entao, Xiao, Xiao, Jia, Lei, Yang, Qun, Li, Haijiang and Zhang, Qinglin 2013. Cognitive control in belief-laden reasoning during conclusion processing: An ERP study. International Journal of Psychology. https://doi.org/10.1080/00207594.2012.677539
Matching bias in syllogistic reasoning: Evidence for a dual-process account from response times and confidence ratings
Stupple, Edward J. N., Ball, Linden J. and Ellis, Daniel 2013. Matching bias in syllogistic reasoning: Evidence for a dual-process account from response times and confidence ratings. Thinking & Reasoning. https://doi.org/10.1080/13546783.2012.735622
Belief–logic conflict resolution in syllogistic reasoning: Inspection-time evidence for a parallel-process model
Stupple, Edward J. N. and Ball, Linden J. 2008. Belief–logic conflict resolution in syllogistic reasoning: Inspection-time evidence for a parallel-process model. Thinking & Reasoning. https://doi.org/10.1080/13546780701739782
Development and validation of the student attitudes and beliefs about authorship scale: a psychometrically robust measure of authorial identity
Cheung, Kevin Yet Fong, Stupple, Edward J. N. and Elander, James 2015. Development and validation of the student attitudes and beliefs about authorship scale: a psychometrically robust measure of authorial identity. Studies in Higher Education. https://doi.org/10.1080/03075079.2015.1034673
The vulnerability of rules in complex work environments: dynamism and uncertainty pose problems for cognition
Clewley, Richard and Stupple, Edward J. N. 2015. The vulnerability of rules in complex work environments: dynamism and uncertainty pose problems for cognition. Ergonomics. https://doi.org/10.1080/00140139.2014.997804
A review of “Education in Parapsychology: Student and Instructor Perspectives” by H. J. Irwin
Schofield, M. 2014. A review of “Education in Parapsychology: Student and Instructor Perspectives” by H. J. Irwin.
Dissociative tendencies, sensory processing sensitivity and aberrant salience as predictors of anomalous experiences and paranormal attributions.
Irwin, Harvey. J., Schofield, M. and Baker, Ian S. 2014. Dissociative tendencies, sensory processing sensitivity and aberrant salience as predictors of anomalous experiences and paranormal attributions. Journal for the Society of Psychical Research.
The intersection between Descriptivism and Meliorism in reasoning research: further proposals in support of ‘soft normativism’
Edward J. N. Stupple, Linden J. Ball and Stupple, E. 2014. The intersection between Descriptivism and Meliorism in reasoning research: further proposals in support of ‘soft normativism’. Frontiers in Psychology . https://doi.org/10.3389/fpsyg.2014.01269
The neural correlates of belief-bias inhibition: The impact of logic training
Luo, Junlong, Tang, Xiaochen, Zhang, Entao and Stupple, Edward J. N. 2014. The neural correlates of belief-bias inhibition: The impact of logic training. Biological Psychology. https://doi.org/10.1016/j.biopsycho.2014.09.010
In search of critical thinking in psychology: an exploration of student and lecturer understandings in higher education
Duro, Elaine, Elander, James, Maratos, Frances A., Stupple, Edward J. N. and Aubeeluck, Aimee 2013. In search of critical thinking in psychology: an exploration of student and lecturer understandings in higher education. Psychology Learning & Teaching. 12 (3). https://doi.org/10.2304/plat.2013.12.3.275
Inspection-time analysis of syllogistic reasoning processes
Stupple, Edward J. N. 2007. Inspection-time analysis of syllogistic reasoning processes. Thesis
Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations
Aubeeluck, Aimee, Dorey, Julie, Squitieri, Ferdinando, Clay, Emilie, Stupple, Edward J. N., De Nicola, Annunziata, Buchanan, Heather, Martino, Tiziana and Toumi, Mondher 2012. 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. https://doi.org/10.1007/s11136-012-0227-2
‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients
Aubeeluck, Aimee, Buchanan, Heather and Stupple, Edward J. N. 2011. ‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients. Quality of Life Research. https://doi.org/10.1007/s11136-011-0062-x
When logic and belief collide: Individual differences in reasoning times support a selective processing model
Stupple, Edward J. N., Ball, Linden J., Evans, Jonathan St. B. T. and Kamal-Smith, Emily 2011. When logic and belief collide: Individual differences in reasoning times support a selective processing model. Journal of Cognitive Psychology. https://doi.org/10.1080/20445911.2011.589381