Concerns and considerations among caregivers of a child with autism in Qatar.

BACKGROUND: Autism impacts the lives of the family looking after a child with the condition in different ways, and forces family members to modify their daily lives to suit their reality. To our knowledge, no previous research investigated concern and considerations of parents/caregivers of children with autism in Qatar or the Arabic speaking Middle Eastern region. METHODS: Caregivers of a child who was between the age of 3 to 17 years old at the time of the study and who was diagnosed with ASD (Autistic Group or AG) were recruited from the two main developmental pediatric and children rehabilitation clinics in Qatar. The control group (non-autism group, or NAG) was represented by caregivers of a non-autistic child between the age of 3 to 17 years old at the time of the study and who were visiting a family clinic of a primary health care facility for routine medical check-up. Data collected from both groups included related to the child (e.g. the child's date of birth, his/her relation to the caregiver, number of siblings, number of hours of sleep in a day, number of hours spent watching television or videos prior to age 3, time spent indoors prior to age 3, absenteeism from school, and use of a nanny to care for the child) and to the caregiver (education level, profession, level of consanguinity using the phylogram method). In addition to these questions, caregivers in the AG were asked specific questions around maternal concern and considerations in respect to the future of their children and the specialized services they receive. RESULTS: Children in the autism group spent more time indoors, watching television, or sleeping than children in the non-autism group. Only around 40% of caregivers in the autism group said they would encourage their child to get married and become a parent when s/he grows up. A number of caregivers of children with autism frequently utilize specialized rehabilitation services; others did express their needs for these services and made comments about having to wait a long time before they were provided with some of the services. Religious faith helped caregivers in accepting having a child with autism. General health-related quality of life did not differ significantly between the caregivers of the two groups, although mental health was consistently poorer in the autism group of caregivers. CONCLUSIONS: The study draws attention to the concerns of the families of children with autism and their expectations about the future of their children. The findings can be used by policy makers in planning services to support these families in Qatar.

Assessing the responsiveness of the Asthma Quality of Life Questionnaire with pharmaceutical care.

OBJECTIVE: To assess the responsiveness of the Asthma Quality of Life Questionnaire (AQLQ) in the context of pharmaceutical care delivery New Zealand community pharmacy setting. SETTING: Community pharmacy practices in three locations in the Otago and Southland region of New Zealand. METHOD: About 62 patients with asthma (17-80 years of age) were recruited in five community pharmacies in the Otago and the Southland region of New Zealand. Patients were randomly assigned to two groups (Group 1 and Group 2). The AQLQ and a study-specific outcomes questionnaire were administered to both groups at baseline (T1), then again (with an additional global Self-Assessment of change question) 3 months later (at T2) after providing the service to Group 1. Responsiveness of the AQLQ was assessed by measuring the ability of the AQLQ to detect within-subject change in patients who subjectively indicated change, and to distinguish between two groups of patients: those who indicated change and those who indicated no change. Additionally, the correlation between the change of the AQLQ scores at T2 and the patients' self-assessment of change at T2 was estimated and used as means for assessing the AQLQ responsiveness. MAIN OUTCOME MEASURE: Asthma-specific quality of life as measured by the AQLQ and change in quality of life as perceived by participants. RESULTS: The results supported the responsiveness of three out of the four domains of the Asthma Quality of Life Questionnaire. The fourth domain, Environmental stimuli, showed weaker responsiveness, and the reasons of this were discussed. CONCLUSION: This study provided data supporting the responsiveness of the AQLQ when used in the context of pharmaceutical care. However, while the AQLQ's Activity Limitation, Symptoms and Emotional domains reflected adequate sensitivity to change in QoL over time, its Environmental domain was less sensitive. Researchers conducting longitudinal studies utilising the AQLQ in pharmaceutical care interventions should bear this in mind, and should consider the possible reasons for this apparent lack of responsiveness, and its implications.

Health-related quality of life measurement in pharmaceutical care. Targeting an outcome that matters.

The shift in emphasis of healthcare from dealing only with disease and death to also managing illness, meant that healthcare providers started to realise the importance of assessing the quality of the patient's life as a new therapeutic outcome. This is equally true in the evolving concept of pharmaceutical care, the ultimate target of which is improving the patient's quality of life (QoL) through a cooperative alliance between the pharmacist and the patient. This article discusses the place of QoL assessment in today's healthcare environment, with special emphasis on its use in the practice of pharmaceutical care.