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World Health Organization. WHOQOL: Measuring Quality of Life. Available at https://www.who.int/toolkits/whoqol (accessed December 2021).World Health OrganizationWHOQOL: Measuring Quality of LifeAvailable at https://www.who.int/toolkits/whoqol (accessed December 2021).Search in Google Scholar
Osborne TR, Ramsenthaler C, Siegert RJ, et al. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol 2012; 89: 437–457 doi:10.1111/ejh.12012.OsborneTRRamsenthalerCSiegertRJWhat issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life toolsEur J Haematol20128943745710.1111/ejh.1201222985406Open DOISearch in Google Scholar
Koot HM. The study of quality of life: concepts and methods. In: Koot HM., Wallender JL eds. Quality of Life in Child and Adolescent Illness. New York, Taylor and Francois Inc; 2001:3–21.KootHMThe study of quality of life: concepts and methodsIn:KootHM.WallenderJLeds.Quality of Life in Child and Adolescent IllnessNew YorkTaylor and Francois Inc2001321Search in Google Scholar
Parens E, Asch A. Disability rights critique of prenatal genetic testing: Reflections and recommendations. Mental Retardation and Developmental Disabilities Research Reviews. 2003;9(1):40–47 doi.org/10.1002/mrdd.10056.ParensEAschADisability rights critique of prenatal genetic testing: Reflections and recommendationsMental Retardation and Developmental Disabilities Research Reviews2003914047doi.org/10.1002/mrdd.10056.10.1002/mrdd.1005612587137Search in Google Scholar
Macduff C. Respondent-generated quality of life measures: useful tools for nursing or more fool's gold? J Adv Nurs 2000; 32(2): 375–382 doi:10.1046/j.1365-2648.2000.01486.x.MacduffCRespondent-generated quality of life measures: useful tools for nursing or more fool's gold?J Adv Nurs200032237538210.1046/j.1365-2648.2000.01486.x10964185Open DOISearch in Google Scholar
Fletcher S, Jenner K, Holland M, Khair K. The lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & Me. Health Expect. 2021;1–12. doi:10.1111/hex.13404.FletcherSJennerKHollandMKhairKThe lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & MeHealth Expect.202111210.1111/hex.13404884924634878209Open DOISearch in Google Scholar
Fletcher S, Jenner K, Holland M, Chaplin S, Khair K. An exploration of why men with severe haemophilia might not want gene therapy: The exigency study. Haemophilia 2021;27:760–768. doi: 10.1111/hae.14378.FletcherSJennerKHollandMChaplinSKhairKAn exploration of why men with severe haemophilia might not want gene therapy: The exigency studyHaemophilia20212776076810.1111/hae.1437834265145Open DOISearch in Google Scholar
Khair K, Steadman L, Chaplin S, Holland M, Jenner K, Fletcher S. Parental perspectives on gene therapy for children with haemophilia: the Exigency study. Haemophilia 2020; 27(1): 120–128. doi: 10.1111/hae.14188.KhairKSteadmanLChaplinSHollandMJennerKFletcherSParental perspectives on gene therapy for children with haemophilia: the Exigency studyHaemophilia202027112012810.1111/hae.1418833216422Open DOISearch in Google Scholar
Fletcher S, Jenner K, Pembroke L, Holland M, Khair K. The experience of people with haemophilia undergoing gene therapy in a clinical trial setting: Regaining Control, an Exigency Study (manuscript submitted for publication, 2021).FletcherSJennerKPembrokeLHollandMKhairKThe experience of people with haemophilia undergoing gene therapy in a clinical trial setting: Regaining Control, an Exigency Study (manuscript submitted for publication, 2021)10.1186/s13023-022-02256-2898174735379267Search in Google Scholar
Charon R. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA 2001; 286(15): 1897–902. doi:10.1001/jama.286.15.1897.CharonRNarrative medicine: a model for empathy, reflection, profession, and trustJAMA200128615189790210.1001/jama.286.15.189711597295Open DOISearch in Google Scholar
Hojat M, Louis DZ, Markham FW, Wender R, Rabinowitz C, Gonnella JS. Physicians' empathy and clinical outcomes for diabetic patients. Acad Med 2011; 86(3): 359–64. doi:10.1097/ACM.0b013e3182086fe1.HojatMLouisDZMarkhamFWWenderRRabinowitzCGonnellaJSPhysicians' empathy and clinical outcomes for diabetic patientsAcad Med20118633596410.1097/ACM.0b013e3182086fe121248604Open DOISearch in Google Scholar
Attar HS, Chandramani S. Impact of physician empathy on migraine disability and migraineur compliance. Ann Indian Acad Neurol 2012; 15(Suppl 1): S89–94. doi:10.4103/0972-2327.100025AttarHSChandramaniSImpact of physician empathy on migraine disability and migraineur complianceAnn Indian Acad Neurol201215Suppl 1S899410.4103/0972-2327.100025344422023024571Open DOISearch in Google Scholar
Carey MA, Smith MW. Capturing the group effect in focus groups: a special concern in analysis. Qualitative Health Research 1994; 4(1): 123–127. doi.10.1177/104973239400400108CareyMASmithMWCapturing the group effect in focus groups: a special concern in analysisQualitative Health Research19944112312710.1177/104973239400400108Open DOISearch in Google Scholar
Kaplowitz MD, Hoehn JP. Do focus groups and individual interviews reveal the same information for natural resource valuation? Ecological Economics 2001; 36(2): 237–247 doi:10.1016/S0921-8009(00)00226-3.KaplowitzMDHoehnJPDo focus groups and individual interviews reveal the same information for natural resource valuation?Ecological Economics200136223724710.1016/S0921-8009(00)00226-3Open DOISearch in Google Scholar
MacDougall C, Baum F. The devil's advocate: a strategy to avoid groupthink and stimulate discussion in focus groups. Qualitative Health Research 1997; 7 (4): 532–541. doi10.1177/104973239700700407.MacDougallCBaumFThe devil's advocate: a strategy to avoid groupthink and stimulate discussion in focus groupsQualitative Health Research19977453254110.1177/104973239700700407Open DOISearch in Google Scholar
Khair K, Phillott A, Loran C, Pollard D, Forrester C, Alavian S, Hook S. HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life. J Haem Pract 2014;1(3): 14–20. doi: 10.17225/jhp.00030.KhairKPhillottALoranCPollardDForresterCAlavianSHookSHaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily lifeJ Haem Pract201413142010.17225/jhp.00030Open DOISearch in Google Scholar
Archibald MM, Ambagtsheer RC, Casey MG, Lawless M. Using Zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participants. International Journal of Qualitative Methods 2019; 18: 1–8. doi:10.1177/1609406919874596.ArchibaldMMAmbagtsheerRCCaseyMGLawlessMUsing Zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participantsInternational Journal of Qualitative Methods2019181810.1177/1609406919874596Open DOISearch in Google Scholar
Gray LM, Wong-Wylie G, Rempel GR, Cook K. Expanding qualitative research interviewing strategies: Zoom video communications. The Qualitative Report 2020; 25(5): 1292–1301. doi: 10.46743/2160-3715/2020.4212.GrayLMWong-WylieGRempelGRCookKExpanding qualitative research interviewing strategies: Zoom video communicationsThe Qualitative Report20202551292130110.46743/2160-3715/2020.4212Open DOISearch in Google Scholar