Through their eyes: A retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington's disease.

Authors: Daemen, Maud MJ, Duits, Annelien A, van der Meer, Lucienne B, Andriessen, Ruben L, Veenhuizen, Ruth B, Wassenberg, Renske, Peeters, Tanja, de Jager, Lia, Oosterloo, Mayke

Source: Journal of Huntington's Disease; Feb2025, Vol. 14 Issue 1, p93-102, 10p

Meaningful and Measurable Health Domains in Huntington’s Disease: Large-Scale Validation of the Huntington’s Disease Health-Related Quality of Life Questionnaire Across Severity Stages

Authors: Downie, Lorna, Jack, Roisin, Matheson, Kirsty, Miedzybrodzka, Zosia, Rae, Daniela, Simpson, Sheila A., Summers, Fiona, Ure, Alexandra, Vaughan, Vivien, Akhtar, Shahbana, Crooks, Jenny, Curtis, Adrienne, de Souza (Keylock), Jenny, Piedad, John, Rickards, Hugh, Wright, Jan, Coulthard, Elizabeth, Gethin, Louise, Hayward, Beverley, Sieradzan, Kasia, Wright, Abigail, Barker, Roger A., O’Keefe, Deidre, Gerrtiz (nee Di Pietro), Anna, Fisher, Kate, Goodman, Anna, Hill, Susan, Mason, Sarah, Swain, Rachel, Guzman, Natalie Valle, Busse, Monica, Butcher, Cynthia, Callaghan, Jenny, Dunnett, Stephen, Clenaghan, Catherine, Fullam, Ruth, Hunt, Sarah, Jones, Lesley, Jones, Una, Khalil, Hanan, Minster, Sara, Owen, Michael, Price, Kathleen, Townhill, Jenny, Rosser, Anne, Goudie, David, Buchanan, Lindsay, McFadyen, Paula, Tonner, Alison, Taylor, Anne-Marie, Edwards, Maureen, Ho, Carrie, McGill, Marie, Porteous, Mary, Pearson, Pauline, Harrower, Timothy, Irvine, Sarah, Brockie, Peter, Foster, Jillian, Johns, Nicola, McKenzie, Sue, Rothery, Jean, Thomas, Gareth, Yates, Shona, Deith, Catherine, Ireland, Jane, Ritchie, Stuart, Brown, Pauline, Burrows, Liz, Fletcher, Amy, Harding, Alison, Harrison, Kaye, Laver, Fiona, Silva, Mark, Thomson, Aileen, Chu, Carol, Evans, Carole, Gallentree, Deena, Hamer, Stephanie, Kraus, Alison, Markova, Ivana, Raman, Ashok, Rowett, Liz, Andrew, Alyson, Frost, Julie, Noad, Rupert, Cosgrove, Jeremy, Gallantree, Deena, Hobson, Emma, Jamieson, Stuart, Longthorpe, Mandy, Musgrave, Hannah, Peacy, Caroline, Toscano, Jean, Wild, Sue, Yardumian, Pam, Clayton, Carole, Dipple, Heather, Freire-Patino, Dawn, Hallam, Caroline, Middleton, Julia, Alusi, Sundus, Davies, Rhys, Foy, Kevin, Gerrans, Emily, Pate, Louise, Anjum, Uruj, Coebergh, Jan, Eddy, Charlotte, Lahiri, Nayana, McEntagart, Meriel, Patton, Michael, Peterson, Maria, Rose, Sarah, Andrews, Thomasin, Dougherty, Andrew, Golding, Charlotte, Kavalier, Fred, Laing, Hana, Lashwood, Alison, Robertson, Dene, Ruddy, Deborah, Santhouse, Alastair, Whaite, Anna, Gosling (nee Brown), Stefanie, Bruno, Stefania, Chu, Elvina, Doherty, Karen, Haider, Salman, Hensman, Davina, Lewis, Monica, Novak, Marianne, Patel, Aakta, Robertson, Nicola, Rosser, Elisabeth, Tabrizi, Sarah, Taylor, Rachel, Warner, Thomas, Wild, Edward, Arran, Natalie, Bek, Judith, Craufurd, David, Hare, Marianne, Howard, Liz, Huson, Susan, Johnson, Liz, Jones, Mary, Krishnamoorthy, Ashok, Murphy, Helen, Oughton, Emma, Partington-Jones, Lucy, Rogers, Dawn, Sollom, Andrea, Snowden, Julie, Stopford, Cheryl, Thompson, Jennifer, Trender-Gerhard, Iris, Verstraelen (formerly Ritchie), Nichola, Westmoreland, Leann, Cass, Ginette, Davidson, Lynn, Davison, Jill, Fullerton, Neil, Holmes, Katrina, Komati, Suresh, McDonnell, Sharon, Mohammed, Zeid, Morgan, Karen, Savage, Lois, Singh, Baldev, Wood, Josh, Nemeth, Andrea H., Siuda, Gill, Valentine, Ruth, Dixon, Kathryn, Armstrong, Richard, Burn, John, Weekes, Rebecca, Craven, Janet, Bailey, Wendy, Coleman, Caroline, Haig-Brown, Diane, Simpson, Steve, Majeed, Tahir, Verstraelen (Ritchie), Nicola, Barrett, Wendy, Ho, Aileen, Bandmann, Oliver, Bradbury, Alyson, Fairtlough, Helen, Fillingham, Kay, Foustanos, Isabella, Gill, Paul, Kazoka, Mbombe, O’Donovan, Kirsty, Nevitt, Louise, Peppa, Nadia, Quarrell, Oliver, Taylor, Cat, Tidswell, Katherine, Kipps, Christopher, MacKinnon, Lesley, Agarwal, Veena, Hayward, Elaine, Gunner, Kerry, Harris, Kayla, Anderson, Mary, Heywood, Melanie, Keys, Liane, Smalley, Sarah, El-Nimr, George, Duffell, Allison, Wood, Sue, Kennedy (nee Smith), Karen, Gowers, Lesley, Powell, Kingsley, Bethwaite, Pamela, Edwards, Rachel, Fuller, Kathleen, Phillips, Michelle, Bucher, Walter, de Schepper, Beatrice, Eden, John, Hendrikx, Victor, Hughes, Alis, King, Diana, Kleibrink, Ursula, Kuttruff-Wilschut, Rita, Lenon-Bird, Anne, Lohkamp, Christiane, Perrousseaux, Marie-Odile, Martinez, Asuncion, Rapaille, Lilliane, Santini, Helen, Sasinkova, Pavla, Soltysiak, Beverley, Smith, Steve, van der Leer, Hans, van der Meer, Lucienne, Wooldridge, Michael, Zinzi, Paola, Ho, Aileen K., Horton, Mike C., Landwehrmeyer, G. Bernhard, Burgunder, Jean-Marc, Tennant, Alan

Source: In Value in Health June 2019 22(6):712-720

Psychologische en psychiatrische zorg bij erfelijke hersenziekten

Authors: van der Meer, Lucienne B.

Source: Nederlands tijdschrift voor geneeskunde. 163(48):20-33

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCRN622331030&indx=1&recIds=ETOCRN622331030

The Hold me Tight Program for Couples Facing Huntington's Disease.

Authors: Petzke, Tara M., Rodriguez-Girondo, Mar, van der Meer, Lucienne B.

Source: Journal of Huntington's Disease; 2022, Vol. 11 Issue 2, p203-215, 13p

Subject Terms: HUNTINGTON disease, MULTILEVEL models, ATTACHMENT behavior, COUPLES, HEMODIAFILTRATION

An International Validation of a Clinical Tool to Assess Carers' Quality of Life in Huntington's Disease.

Authors: Aubeeluck, Aimee, Stupple, Edward J. N., Schofield, Malcolm B., Hughes, Alis C., van der Meer, Lucienne, Landwehrmeyer, Bernhard, Ho, Aileen K.

Source: Frontiers in Psychology; 7/23/2019, p1-12, 12p

Subject Terms: HUNTINGTON disease, QUALITY of life, STRUCTURAL frame models, CONFIRMATORY factor analysis

Through their eyes: A retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington’s disease

Authors: Daemen, Maud MJ, Duits, Annelien A, van der Meer, Lucienne B, Andriessen, Ruben L, Veenhuizen, Ruth B, Wassenberg, Renske, Peeters, Tanja, de Jager, Lia, Oosterloo, Mayke

Source: Journal of Huntington's Disease; 20240101, Issue: Preprints

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Offspring of a parent with genetic disease: Childhood experiences and adult psychological characteristics.

Authors: van der Meer, Lucienne. Department of Clinical Genetics, Leiden University Medical Centre, Leiden, Netherlands, l.b.van_der_meer@lumc.nl, van Duijn, Erik. Department of Psychiatry, Leiden University Medical Centre, Leiden, Netherlands, Wolterbeek, Ron. Department of Medical Statistics, Leiden University Medical Centre, Leiden, Netherlands, Tibben, Aad, ORCID 0000-0002-4560-1710. Department of Clinical Genetics, Leiden University Medical Centre, Leiden, Netherlands

Source: Health Psychology, Vol 33(12), Dec, 2014. pp. 1445-1453.

NLM Title Abbreviation: Health Psychol

Publisher: US : American Psychological Association

Other Publishers: US : Lawrence Erlbaum Associates

Publication Type: Journal; Peer Reviewed Journal

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