Pilot testing of the ‘Haemo‐QoL’ quality of life questionnaire for haemophiliac children in six European countries

Abstract

In a multinational working group, an instrument (Haemo-QoL) to assess quality of life in children/adolescents with haemophilia and their parents has been developed. In co-operation with haemophilia treatment centres in six European countries, approximately 10 children/adolescents with haemophilia per country and their parents were asked to participate in the pilot-testing. Both self-reported and parent-reported questionnaires were provided for two age-groups of children (4-16 years). Medical data was collected from physicians from patient files. Answers to open questions from participants (58 children and 57 parents) confirmed the content of 116 of the preliminary items. Cognitive debriefing revealed that the majority of the Haemo-QoL was rated favourably, but 29 questions were recommended to be omitted and several items to be reformulated. Preliminary psychometric testing of the revised 77 item questionnaire in the same sample showed acceptable reliability and validity, which will be examined in a subsequent study with a larger patient sample.

Qualidade de vida avaliada pelo instrumento “Canadian Haemophilia Outcomes: Kids' Life Assessment Tool”: uma revisão

“…A literatura atual apresenta diversos instrumentos específicos utilizados para avaliar a QVRS em pacientes adultos com hemofilia, como: Haemo-QoL [6][7][8] ; Hemofilia-QoL 9-10 , Hemolatin-QoL 5,11 e HaemoQoL-A [12][13] . Porém, específicos para crianças e adolescentes com hemofilia são poucos, como: Haemo-QoL 6-8 e Canadian Haemophilia Outcomes Kids Life Assessment Tool (CHO-KLAT) [13][14][15] .…”

Health – Related Quality of Life Assessment in Filipino Children with Hemophilia Aged 4 To 16 Years in a Tertiary Hospital

“…Measuring the HRQoL in a quantifiable basis can be of benefit in identifying the subsets of patients who are at risk for hemophilia-related problems, give an estimate of the disease burden and determine treatment satisfaction. Defining how these factors may affect the quality of life of children with this bleeding disorder is feasible by evaluating the physical, emotional, mental, social, and behavioral elements of well-being and function as determined by the patients and observers, leading to the development of the hemophilia-specific QoL questionnaires [2,5].…”

“…These domains were defined by the Haemo-QoL group as follows: The Physical scale includes questions regarding pain, mobility and anxiety; Feeling is concerned with the children's mood, emotional consequence and actions in relation to hemophilia; Attitude scale deals with relationships to others and to own person; the Family scale deals with restrictions, the child's position in the family, problems at home, activities of the parents and own feelings in the family; Friends scale deals with the child's relationship, feelings of anxiety and activities with his friends; Perceived Support scale has questions about how the children recognize social support or estrangement and isolation they receive from others; Sports and School asked about sports participation and school activities and the Coping asked questions about the children's control and emotional acceptance of their hemophilia. Hemophilia care and treatment side effects were asked in Treatment scale; how they interact with others was asked in the Other Persons; and Future and Relationships asked about their views of the future and the possibility of having relationships with the opposite sex [5].…”

A maternidade em mães de crianças com doenças neurológicas crônicas: um estudo sobre a sobrecarga e a qualidade de vida

“…Em seu estudo, o autor constata que, quando membros da família tomam a frente como cuidadores, há maior propensão para o desenvolvimento de estresse, depressão e diminuição subjetiva em sua qualidade de vida. Corroborando esta idéia, Bullinger et al (2002), em seu estudo sobre qualidade de vida do paciente hemofílico e seus pais, discute que as seqüelas psicossociais da Hemofilia em crianças e seus familiares têm sido descritas de um ponto de vista clínico e psicológico, como problemas funcionais na vida diária, estigmatização e isolamento social.…”

“…Nos últimos anos, diversos estudos têm abordado a questão da qualidade de vida em diferentes contextos: a) doenças físicas crônicas e graves, tais como câncer, esclerose múltipla, doença de Parkinson, epilepsia, paralisia cerebral, hemofilia e AIDS (BERLIM; BULLINGER et al, 2002;CHANG et al, 2007;FLECK et al, 2002;MORALES, MORALES, ROCHA et al, 2007;MORALES, 2005;ÖZAKBAS et al, 2007;SABAZ et al, 2001;SCHESTATSKY et al, 2006;WESTPHAL et al, 2005) (BULLA et al, 2006;FLECK et al, 1999a;1999bCHACHAMOVICH;TRENTINI, 2003;PREBIANCHI, 2003 …”